Friday, November 30, 2012

Why should every couple going in for IVF also consider adoption ?

I am an IVF specialist, and many infertile couples I see are worried, depressed and frustrated . They come to me because IVF is their last resort. All the other treatments they have tried have failed, and they are often at their wit’s end. IVF is the treatment which offers them their final chance of having a baby , which is why all their hopes ride on the outcome of the IVF cycle . When I do a consultation , I explain to them that while IVF is a treatment option which is well worth exploring , they should also consider adoption simultaneously.

A lot of patients get very upset when I bring up the topic of adoption . They feel that I am being negative and pessimistic ; and their secret fear is that since I am talking about adoption, I think their chances of success are very poor and their IVF cycle is likely to fail. Some get irritated because they feel that I should have enough sense to realize that if they wanted to adopt , they would not have come to me in the first place !


Wednesday, November 28, 2012

IVF success story for patient from Dubai

We got married in Aug 2007 and immediately decided that we need to have our first kid ASAP. We kept on trying for a year without any success and then decided to see a Gynecologist, for sure under family pressure. The gynecologist told me to do a semen analysis and was shocked to see the result. I was suffering from a condition called azoospermia where I had no sperms in my semen!! This really pulled me back more so mentally than anything else. We did a lot of research on the possible remedies and met a few Urologists - the diagnosis was that I had bilateral varicocele. However, luckily for me I had quite a few sperms in my semen that I was told could be used for an IVF treatment. This gave us a big sigh of relief. But the urologist also said that if I treated the varicocele I can have a baby naturally without any artificial insemination. This excited me and I decided to undergo a varicocele surgery, and guess what!! This changed my life forever and was probably the biggest mistake I had made in my life!! All those few sperms I had vanished!! Mistake no.1!!

It was back to square one and two years had passed by then. We continued our research and zeroed in on three infertility specialists. One was based out of Dubai as we were based out of Dubai, one in Kerala and the third was Dr. Malpani. Though we had found Dr. Malpani on the web, we did not bother to mail him our story as the email communication with other two doctors were quite poor. Mistake no. 2!!

We decided to undergo our first IVF in Dubai just for ease of logistics. We underwent TESA-ICSI. We had very few embryos and that too of poor quality though we had enough sperms & eggs. We anyways went ahead with the embryo transfer and though we did not expect a success, it was devastating to know that the cycle failed. Mistake no. 3!!

We now decided to mail Dr. Malpani about the failed IVF and my condition. There came an immediate response and that too quite detailed. The thing is most of the things that we needed to know is in his website. In fact before undergoing the varicocele surgery  I had read in Dr. Malpani's site that the varicocele surgery is not an useful procedure and it turned out to be quite true. We somehow gained the confidence to see Dr. Malpani and did a "spy" visit to the clinic to know them better. We were really impressed by his patience, attitude and the facilities (all in one place) and he now diagnosed that my wife had PCOD as well!! This came as a another shock.

We then for some reason decided that we will leave it to the Almighty and not do anything. But eventually, deep inside we knew we were young and shouldn't lose our chance like this. We decided now to meet the famous Kerala doctor. I don't know why I did it after meeting Malpani, I think it was influenced by my family as the doctor was from Kerala and we hailed from Kerala. He was so very busy to even meet us and when we eventually met him he told us that our chances are very poor and go for an Ayurvedic treatment!! We actually did not know where to go... But we did spend lot of money, effort & time on Ayurveda as well. As you might have guessed, it did not help us. Wasted another year here, 3 years passed. Mistake no. 4!!
Finally, we decided to follow our gut. We set ourselves for the 2nd IVF now with Dr. Malpani. We stayed in Colaba, Mumbai for 20 days and underwent the procedure ICSI. Actually this time around, I had enough sperms and did not have to undergo a TESA. We had beautiful embryos and transferred them and went back to Dubai after two days. The 10 day wait got over so very slowly and but we thought this time it was on!! But God had other plans, we had our second failed IVF. :( 

But now, we had become so very mentally tough. We knew we had to try again and again - decided we will try till we exhaust our resources. We tried to understand from Dr. Malpani why it had failed. There was no concrete reason but he did suggest some tweaks in the procedure though. We did not get discouraged.
After waiting for another 10 months, in Dec'12 we decided to undergo our 3rd ICSI. Again with Dr. Malpani. This time it had to be a TESA-ICSI. We were very relaxed, had gone for a Mumbai tour, movie, did lots of shipping etc..Just had a great time in Mumbai. Even on the day of embryo transfer. we were relaxed unlike last time. We saw our embryos and they were fantastic. Even the embryologist was impressed by how well the embryo cells were growing. We did the ET, went back to Kerala after 3 days. The 2 week wait was much easier this time, though as you can imagine the nervousness did kick in. Then came a huge shock on the 9th day, my wife started to spot blood slightly. We then started to cry and thought this was yet another failed attempt. We said let us not wait for 2 weeks and do the beta HCG the same day itself. Guess what!! Almighty had other plans this time again. WE HAD A POSITIVE RESULT!! MY WIFE WAS PREGNANT. God was very kind to us!!

We were over the moon and now we are the proud parents of a handsome baby boy. He was born on the 5th Sep'12. This is indeed life changing experience. All my elders use to say, "time will come". Our time has come. We really do not know how to thank Dr. Malpanis and their staff. They have been superb in guiding us, keeping us relaxed and more importantly in executing their skills in the best possible manner.

We have another 7 frozen embryos in storage; and plan to go back after 2 years to complete our family !

Our sincere thanks to Dr.Malpani, his wife and his entire nursing staff.

[email protected]

Monday, November 26, 2012

How computers can help doctors to improve empathy

Many people are worried that the introduction of computers into medicine will further depersonalize clinical care . Their concern is that technology will disrupt the doctor-patient relationship because doctors will start focusing more on the computer screen , rather than on their patients. It's true that doctors find technology very seductive and many enjoy interpreting medical reports and images and scans because they feel this is part of their scientific core competence. However, taking a digital technology versus humanistic clinical care is not a very helpful viewpoint . By adopting such a polarizing approach , we're treating this as a confrontation , and are wasting a great opportunity to improve medical care. Both are complementary , and rather than treat technology as a distraction, we need to learn that it can actually help doctors practice more humane medicine . By providing them with additional tools to make the right diagnosis, it gives them more time to talk to their patients, thus promoting doctor-patient interaction !

When a doctor sees a patient , his first priority is medical – he needs to make the right diagnosis and craft the correct treatment plan. It's only when he is sure he has done a good job as a clinical scientist can he then think about managing the patient’s psyche and emotions. This means that the doctor has two tasks which require complementary skill sets. The first task is one which requires logical scientific analysis , where he collects the right data and works through a differential diagnoses . It is only after he has made the right diagnosis that he can then  move on to his second task , which consists of caring for the patient ; holding his hand ; and helping to guide him . Some doctors who have an excellent bedside manner are often poor diagnosticians; and this can make the patient's life very difficult , because the patient really does require both compassion and competent clinical care .

Computers can help doctors to make the right diagnosis more quickly, because they can act as peripheral digital brains . They help the doctor to ensure that he has covered all the diagnostic possibilities , so he is no longer worried that he may have missed something important . This is one of the major fears which every doctor has ; and until he has confidence in his clinical diagnosis, he cannot move on to dealing with the patient as a human being . The computer can help to expedite the process of making the right diagnosis so that the doctor has more time to spend talking with the patient . It can also give the doctor a lot more security in his clinical competence, so that he can then work on polishing his interpersonal communication skills. Compassion is something which a doctor can provide only after he has ensured that he's provided basic correct clinical care. If a computer can allow him to do so more efficiently, he then has more time and energy to be able to enhance his empathy.

Saturday, November 24, 2012

Decoding Medical Gobbledygook - Health Literacy Puts Patients First

HELP is organizing a conference on “Putting Patients First Through Health Literacy“. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m. The website is The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned Consultant from US , will be delivering the keynote and conducting the workshop. Her website is at We will be releasing our book, Decoding Medical Gobbledygook – Health Literacy Puts Patients First, at the conference !

Friday, November 23, 2012

How to keep your doctor honest

If you have a good doctor , you can be quite confident that you will get good medical care. However, the problem is that you don't know whether or not your doctor is competent. All of us believe that our personal doctor is capable – after all, this is one of the reasons why you selected that particular doctor !

Unfortunately , it can be very hard for a patient to judge a doctor’s clinical skills, since patients do not have the ability to measure a doctor’s technical abilities .This is why patients are often forced to use surrogate markers when selecting a doctor . They will use a recommendation from a family member or a friend or another doctor as a proxy marker for the doctor’s competence. Others have to judge by intangibles , such as the doctors bedside manner ; his clinic ambience ; his professional reputation ; or articles about him in the newspaper. Unfortunately, none of these are very reliable methods for determining how good your doctor is.

Patients need to invest more time and energy in order to make sure that they're getting the best possible medical care from a good doctor . One way of doing this is to do your homework and use Information Therapy so that you can judge what the most important criterion of technical competence is for the particular treatment which you are taking. While this may seem to be a daunting task , it is actually quite simple , because technology has improved so much . To give you an example , if you're going to an IVF clinic , you should insist on seeing photographs of your embryos , because this is the one tangible end point which a good IVF clinic can provide . Good IVF clinics are proud of the fact that they create good embryos and are happy to share this with their patients to document their clinical proficiency . If your doctors are reluctant to give you photos of your embryos, this is a red flag which should cause you concern.

Similarly, if you need to choose an endoscopy surgeon to do an operative laparoscopy for you, it is important that you ask your surgeon whether he will provide you with video documentation of the surgery, because this provides tangible evidence that the surgery was performed competently and efficiently. Thanks to advances in medical technology, it is now possible for most doctors to provide visual documentation of every procedure . A simple typewritten report is no longer enough . It’s important to find out before the procedure what the key visual documentation for the procedure is, and to confirm with your doctor whether he will do this for you before you sign up for the procedure . Good doctors are happy to share information with patients and document their clinical skills. If your doctor is reluctant to do so , this should cause concern.

How can you find out what the key visual documentation for your particular procedure is ? An easy way is to get a second opinion from an expert ! He will be able to tell you what the basic standards are. If your doctor cannot meet them, this is cause for concern !

Will your doctor take offense if you ask for this ? A good doctor should not , because he understands the value of good documentation, and provides this to his patients routinely and proactively !

Thursday, November 22, 2012

IVF success story for PCOD patient at Malpani Infertility Clinic

Our struggle with infertility started shortly after our marriage when I was diagnosed with PCOD. However, it was only when we started trying to conceive that we realized how and to what extent it reduced our chances of having a baby. After struggling for almost 5 years with medications and IUI we decided to seek serious intervention and underwent IVF at a well -known hospital in Bangalore. It failed, also shaking our belief that IVF was a sure short method of conceiving. We repeated the IVF cycle again with the same doctor and it failed again. This time the doc stated that she has done the best she could and it was our choice whether we repeat the regime over and over till we get pregnant or give up. I was appalled by her insensitivity and also with the thought that probably we have hit a medical roadblock.

We decided to take a break and keep trying without medical help. Incidentally, we got pregnant twice but lost both the pregnancies in the first trimester. It was then that one of my acquaintances got pregnant after undergoing IVF at Malpani infertility clinic. I approached Dr. Aniruddha Malpani for an opinion and after considering our medical history and reports he sounded very optimistic about getting us pregnant. I underwent IVF at the clinic and was happily surprised by the number of embryos we made in the cycle. We transferred 4 but unfortunately I didn’t conceive. I was really disappointed but the remaining frozen embryos and DrMalpani’s positive attitude helped me to hold on to the tiny flicker of hope I had. A year later we had another transfer and I got a positive beta. We were happy, excited and nervous-we saw a heartbeat and were comforted a bit. When we went for a repeat scan, the heartbeat was missing from both the foetuses. I was shattered all over- but determined to go through the transfer once again with my faith on DrMalpani further strengthened.

This time I conceived again and after a tough journey loaded with medicines, injections and absolute restriction on movement, delivered our baby boy. After 9 long years of trying, we became proud parents. For me, Dr Malpani has also been a great motivator and had it not been for his optimistic attitude, we would never have had our baby. He is an excellent doctor and his staff is extremely good. The ease with which my cycles at Dr Malpani’s clinic progressed took so much suffering off us. There is a lot of personal attention/sensitivity as compared to callous treatment meted out at other infertility clinics. I always repent having wasted my time with other doctors and not having approached him in the first place. On a positive side, my road and journey is already set in case I ever decide to have another baby.

[email protected]

Wednesday, November 21, 2012

IVF success story for a couple from Bangalore

I am 37 years old and my wife is 29 years old. We had been married for 3+ yrs, and had been trying to get pregnant ever since but unfortunately suffered a miscarriage first; and the second time it was an ectopic pregnancy where my wife lost her left fallopian tube. By losing one tube, chances of getting pregnant goes down by 50%. We live in Bangalore, and consulted many infertility specialists in Bangalore. We were extremely stressed & dejected and started avoiding our friends and relatives whose only question was when are we going to give the good news. We were spending most of our income on our treatments and obviously this took financial toll on us too. Apart from that, doctors whom we met all these years were too commercial and somehow I thought infertility has become a money spinning business for IVF clinics without any human touch.

Though me and my wife was so fed up with all these useless treatments that we refused to take any further treatment and almost decided to live life as it comes. We both were not interested to go for IUI since we heard that our friends underwent IUI all of which had failed. One last time we went for a second opinion with one of the specialists in Bangalore. Once he saw all our past reports he directly suggested us to go for IVF. But he insisted us to go for IVF only with Dr. Malpani in Mumbai. This was little confusing and we needed to think about it – why was he advising us to go all the way to Mumbai ? Didn’t have Bangalore have good IVF clinics as well ? The same day in the evening we went through Dr.Malpani’s website and were impressed by their work and the success stories. The next day we scanned all our reports to the doctor through mail. To our surprise the doctor replied to us within 4 to 5 hrs with the required information with cost of IVF. We decided to take some time off before starting the next cycle. Finally we decided to take up the treatment .
We kept in touch with Dr Malpani through Emails and he was always prompt in responding to mails. We never felt we are 1200 Kms away from Dr Malpani as he was always reachable by email. We were quite impressed with the professionalism and prompt response. My wife started taking injections in Bangalore itself and landed in Mumbai on 10'th day of her cycle in August 2012. We stayed near the clinic so commute was not a problem. But there was some bad news in store for us. Dr Malpani did the scan and told that there were not many follicles on 10'th day and we may have to cancel the cycle.

We were heart broken and thought that all our efforts had gone to waste. But then the doctor suggested doubling the injection dose ; and recommended that we see how the ovaries respond in next 3-4 days , after which we would take a call. We agreed and decided to continue for 3-4 days more. We hoped that the follicles would grow and increase in next 3-4 days. After 4 days of increased medication, miracle happened and Dr Anjali Malpani told us that she could see many more follicles ; and that they needed a  few more days to mature before retrieval. We were scheduled for retrieval on 5th September2012 and Dr Malpani told me that they collected as many as 18 eggs of which 10 eggs were mature.

Embryo transfer was scheduled for 7th September 2012. It was little disappointing when he told that there was only 3 good quality embryos out of 10 matured eggs. Dr Mapani again comforted us and showed us the embryos in the lab. It was great to be able to see the embryos which were ultimately going to become babies. This shows that Dr Malpani really believes in empowering the patient by providing as much information as possible. No other doctor I visited earlier cared to tell us what they were doing. Many a times we would ask him stupid questions and he would address them with patience. I found this a very rare quality among today's doctors.

He transferred 3 good quality embryos and after 3 days of rest, we came back to Bangalore. After 15 days, we did our first bHCG test and oh my god!, IT WAS POSITIVE. We first could not believe it and we were waiting for this moment from last 3 years. I called Dr Malpani immediately and gave him the good news. He was also very happy to hear this. Then he suggested repeating the tests after 3 days. When we repeated the test after 3 days, bHCG doubled which indicated that this is a viable pregnancy.

Now  my wife is 12 weeks pregnant and these are the most precious moments in our life. I treasure my wife's pregnancy and I am enjoying it. All our doubts and questions are still cleared by Dr. Malpani through mail and we are also comforted by his response.

Our sincere thanks to Dr Malpani and Dr. Anjali Malpani for their comfort and positive attitude. We take this opportunity to thank the staff at the clinic for their friendly approach and the homely ambience.

Tuesday, November 20, 2012

How to prepare yourself physically for an IVF cycle

This is a guest post from our expert patient, Manju.

Going through an IVF cycle is exciting and very stressful too. You will be tormented by a variety of emotions. You will be happy that you are taking treatment that might give you a much longed-for baby ;  and at the same time , you have to cope with the fear that the cycle may not work! You want to do everything as perfectly as possible , so that you have given yourself the best chance of success. Your mind will be full of doubts and questions , and you are not sure how to find the answers. You may be needle-phobic and scared to death of all the injections you have to take. Did I inject the medicine properly ? Did I take the proper dosage? What if I forget to take my medicines at the right time - will this affect my cycle? What should I eat and what should I avoid? Will the type of food I eat affect my IVF success? What supplements should I take? Where do I find the much needed emotional and intellectual support?  There are so many questions in the mind of first time IVFers. Most of them search for answers to their questions on the internet , and will get lots of different answers - some reliable and some not.  I hope this article will help you to resolve your doubts . This is reliable information because I am a biologist and have gone through several IVFs myself . Good Luck with your IVF cycle and keep reading!

Life style

Life style factors do have an impact on your fertility , whether you are trying to conceive in your bedroom or when you are doing IVF! Preparing yourself physically is important so that you can maximize your chance of conception.

Below are some common life style habits and behaviors which can be modified in a positive way , so that you give yourself the best chance of succeeding in an IVF cycle.


It is a well-known fact that both obesity and excessive leanness affect fertility. When you decide to go through an IVF cycle , it is wise to concentrate on your body weight and try to bring your BMI to normal. You can calculate your Body Mass Index by using the online BMI calculator. Normal BMI should be within 18.5-24.9 Kg/m2.

Obese women need a significantly higher dose of injections for superovulation ; and their egg yield is also reduced when compared to woman of normal BMI. Their chance of pregnancy is reduced; and they also carry a higher risk of miscarriage. Underweight woman also produce fewer eggs when compared to woman of normal BMI ; and their risk of miscarriage seems to be elevated too. These  are documented facts.  Try to bring your body weight to the optimum level before starting an IVF cycle. Even if you are not able reach your ideal weight range, modest weight loss if you are obese (or weight gain if you are underweight) will help in improving the outcome of your IVF cycle. Many women find that signing up for an IVF cycle provides excellent motivation for optimizing their body weight.

A rapid change in your weight can affect your IVF cycles adversely, so if you plan to make changes to your weight , do it gradually and slowly by following a healthy diet plan and exercise. Do not follow any fad diets and starve yourself. Proper nutrient intake is very important for optimum reproductive functions.


Exercise makes you feel good physically and mentally. It will help you to lose weight and will also aid in maintaining an ideal body weight. Exercise releases many feel good hormones called endorphins which will help you to have a healthy psyche too. It also increases blood flow to various organs ( thus helping in optimal oxygenation) , including your reproductive system.  However, too much of a good thing can be harmful too. Rigorous exercise (more than four hours of strenuous exercise per week) can negatively affect IVF cycle outcome , Such an exercise regimen can reduce your fat reserves drastically , and this will prevent proper functioning of your reproductive hormones. Yoga and pranayama (breathing exercises)  are excellent.  They keep your body flexible and help in blood circulation. Select an exercise which you feel comfortable with. A good exercise schedule will help to reduce your physical and mental stress greatly during an IVF cycle. Avoid doing any strenuous exercise when you are undergoing ovarian stimulation. There is a danger of ovarian torsion as superovulated ovaries are heavier and larger during this time.


It is a well-known fact that smoking can cause enormous harm to various organs in our body. Smoking affects our reproductive organs too. Women who smoke reach menopause earlier than their non-smoking counterparts. Epidemiological studies have repeatedly shown that women of child bearing age who smoke have higher rates of infertility, spontaneous abortion, ectopic pregnancy, tubal infertility, and intrauterine growth retardation than nonsmokers. Smoking decreases ovarian reserve as well. This reduces  oocyte yield and decreases fertilization rates,  leading to a poor prognosis in ART cycles.  In men, cigarette smoking adversely affects sperm quality and causes damage to the sperm DNA. This can lead to male infertility and has been found to adversely affect IVF/ICSI outcome. Passive second hand smoke is dangerous as well !

Alcohol consumption

There are studies which show that maternal and paternal alcohol consumption decreases live birth rate after IVF .  As few as four alcoholic drinks per week decreases IVF birth rate. Female alcohol consumption was associated with decreased egg yield, and an increased risk of miscarriage.  Many people have the misconception that red wine is OK to consume as it has an anti-oxidant called resveratrol.  While it is true that resveratrol has a positive effect on several health parameters and is touted as an anti-aging agent, humans have to consume a bottle of red wine everyday to ingest the amount of resveratrol which is found to be effective in mice experiments (yes in mice! So the amount of resveratrol needed to produce a positive effect on human health will even be higher). So do not use resveratrol as an excuse for drinking alcohol. Few glasses of red wine cannot give you enough resveratrol and on the other hand it can affect your chance of conception when undergoing an IVF cycle.  Remember, moderation is the key here. If you feel relaxed after a drink , go ahead and have it , but avoid going beyond the stipulated limit. You will feel emotionally better if you stop consuming alcohol during an IVF cycle because even if the cycle fails , you will not blame yourself!


Healthy food intake is very important for your fertility and a healthy preconception diet increases the chance of ongoing pregnancy in women undergoing IVF/ICSI treatment. A good diet consists of fresh fruits and vegetables, complex carbohydrates, lean meats, dairy products and healthy fats, all in moderate amounts. There are no special foods that can increase your chance of IVF success and there are no foods that can hinder your chances of success (when not taken in excess!). Adding a wide variety of foods to your diet and taking them in the proper amount is very important for your reproductive health. If you search on the internet, you will find loads of advice on which food to take and which one to avoid when undergoing IVF. But I can vouch that all are just nonsense. Look at the women who conceive naturally; do they take any special food or do they avoid eating any particular food ? Then how could come a particular food either increase or reduce your chances of IVF success ? It is widely speculated that reducing caffeine is good and that increased caffeine intake can reduce your chances of IVF success. But I have found no scientific studies to support this notion.  If you are drinking 2 cups of coffee a day I find no valid reason to cut it down but if you are drinking 10 cups of coffee a day , then it is time to reduce your coffee (caffeine) intake. I have seen people avoiding fat as if it is a poison.  Remember, many sex hormones need cholesterol for their biosynthesis.  It’s fine to take healthy oils and fats in moderate amounts. There are some women who need a special diet, for example women with PCOD and women with diabetes because of the insulin utilization issues they have. Such women should talk to their doctor or dietitian and modify their diet accordingly.  But the basic diet rules are:

1)    Do not follow any fad diets.
2)    Include a wide variety of foods in your diet. Add color to your life by adding different colored vegetables and fruits.
3)    Watch your caloric intake.
4)    Limit your intake of refined , calorie dense, nutrient depleted foods  like white sugar, white bread, white rice; and increase your intake of nutrient rich, calorie sparse foods such as  fresh vegetables and fruits.
5)    Remember, moderation is the key!

Should I take any supplements?  Of course yes! The most important supplement which every woman who is trying to conceive should take is folic acid. Folic acid is proven to prevent neural tube defects in developing embryo. Taking folic acid can prevent 70% of neural tube defects. So make sure you take a supplement containing at least 400µg ( 0.4 mg) of folic acid at least 3 months prior to starting your IVF cycle. If you are diagnosed with mutation in your MTFHR gene you are supposed to take 4mg of folic acid . If you haven’t started taking it 3 months before, do not panic. Better late than never-so start taking it from today!  The internet is full of long lists of supplements ; and many women who have had IVF babies attribute their success to these.  Sometimes I really panic looking at these lists. From fish oil to wheat grass, there are just too many things to take !  Remember, what is good for the goose need not have to be good for the gander. So do not buy and gulp down supplements just because someone else is using it. Most nutrients can be obtained via a good diet. If you think your diet is not good enough , it is wise to start pre-natal vitamins prior to your IVF cycle.  There are some supplements which are helpful for women with a particular condition, for example, DHEA is a supplement which is found to help some women with poor ovarian reserve. So talk to your doctor regarding which supplements can benefit your particular situation. If taking lots of supplements helps you feel better emotionally ( lots of women feel that pills are good for their health) then please use supplements which are proven not to cause any harm ; and buy these from a reputed pharmacy! Some herbal supplements might interfere with your IVF cycle in an unknown and unpredictable manner. Always let your RE know if you are taking any herbal supplements when undergoing an IVF cycle.

 You can email Manju at [email protected]

Her blog is at

Monday, November 19, 2012

Medicine by the numbers

This is the age of data. Everyone is hopeful that based on number crunching and data analytics, we will be able to improve the quality of health we provide to patients. Thus , Mr Khosla believes that Big Data ( will allow us to create algorithms to treat patients, making the doctor a commodity; and sites like 23 and me (
are promising to take personalized digital medicine to the next level by providing genomic data to individuals . The hope is that people can use the information in their DNA to not only be able to predict which diseases they are at risk of; but also to be able to receive personalized therapeutics. Personalised genomics and personalized proteomics have been promoted as having the potential to revolutionise medicine.

On an intuitive level, this makes a lot of sense. After all , isn’t every patient different ? Doesn’t it make sense to customize treatment for each individual ? Won’t having more data make it easier for the doctor to be able to find the right personalized treatment for you ?

I think there are 2 things wrong with this approach.

 One is that a lot of the data is just noise , and we are not very good at extracting the signal from all this noise , because so much of it is just random . This means we will end up overtreating and mistreating a large number of patients . Medicine has accumulated a lot of knowledge , based on empirical evidence painstakingly collected by wise doctors over many years of experience , and it’s still not possible to convert all this digital data into clinically meaningful interventions .

Even worse is the possibility that this data may just drive a further wedge between the doctor and the patient . Even today, most patients are extremely unhappy about the fact that doctors are more interested in treating their lab test results or looking at their CT scans, rather listening to them; or their heart or lungs.  The new tsunami of digital data may end up overwhelming the doctor’s neuronal circuits , so that he may have no time to talk to the patient at all – or , even worse , may not even feel the need to do so, because he believes he has all the data he needs to make the right diagnosis and provide the right treatment !.

This kind of depersonalization of the doctor-patient relationship bodes ill for the future. When you are
sick , you don't just want treatment - you need someone who will hold your hand ; provide you with a shoulder to cry on ; and treat you with tender loving care and compassion.  The danger is that too much data and digital analysis will end up depersonalizing medicine,  rather than personalizing it !

Sunday, November 18, 2012

A Perspective on Health Literacy’s Past, Present, and Future

This is a guest post by Helen Osborne.

December 1995 was the first time I ever heard the term “health literacy.” I was working as an occupational therapist on a psychiatric unit at a small, community-based hospital in Boston, MA. I had just read a research article published in the Journal of the American Medical Association (JAMA). It was titled “Inadequate Functional Health Literacy Among Patients at Two Public Hospitals,” written by Williams, Parker, Baker et al. The authors of this article concluded, “Many patients at our institutions cannot perform the basic reading tasks required to function in the health care environment. Inadequate health literacy may be an important barrier to patients' understanding of their diagnoses and treatments, and to receiving high-quality care.” Read more @

That article was an “Aha!” moment for me. With this new perspective, I critically examined my worksheets, which I had thought were well written. I realised to my dismay that many of my patients who came from different cultures and educational levels might have a hard time making sense of them. I didn’t need more convincing that health literacy mattered. Indeed, I was part of the problem. Now, I wanted to be part of the solution.

But what could I do? At the time there was little guidance. Other than this one research article, the only other resource I could find was the (ever-excellent) book by Doak, Doak, and Root, Teaching Patients with Low Literacy Skills (@

Nonetheless, I forged ahead. I introduced my healthcare colleagues to the concept of health literacy. I introduced myself to those outside of healthcare who knew a lot about literacy, teaching, and communication. And I met fellow health literacy advocates who came from many sectors including public health, academia, adult education, and pharmaceutical companies.

But outside this group, health literacy was still not widely known. So in 1999 I posted a message on a health literacy listserv (an online discussion group) asking what others thought about creating an awareness-raising campaign. Honestly, I expected little response. I was stunned when many replied “Great idea. What are YOU going to do?” And so Health Literacy Month began. This annual awareness-raising event has been celebrated worldwide ever since (@

Over time, health literacy commanded more attention. A significant turning point was in 2004 when the Institute of Medicine (IOM) of the National Academies published a landmark report, Health Literacy: A Prescription to End Confusion. Its executive summary states, “Nearly half of all American adults—90 million people—have difficulty understanding and acting on health information.” (@ )

In the last decade especially, there have been thousands of peer-reviewed research studies confirming that health literacy is a serious and pervasive problem with costly consequences. You can find links to many of these studies at the US National Network of Libraries of Medicine website, @

Government leaders, too, are getting more involved in health literacy. Starting in 2010, the US is at what some refer to as a health literacy “tipping point” with the enactment of several significant laws and policy recommendations. These include:

    National Action Plan to Improve Health Literacy, with seven goals to improve health literacy and suggested strategies for achieving them.  @
    Plain Writing Act of 2010. A law requiring that federal agencies communicate in ways that the public can understand and use. @
    Patient Protection and Affordable Care Act (often referred to as “healthcare reform”). This includes several direct and indirect references to health literacy. @ )
    Health Literacy Universal Precautions Toolkit, commissioned by the federal Agency for Healthcare Research and Quality (AHRQ). @

You can hear Dr. Howard Koh, Assistant Secretary for the US Department of Health and Human Services, discuss these and other health literacy milestones at @

Health literacy is also getting worldwide attention. In September 2012, the Institute of Medicine’s Health Literacy Roundtable commissioned a report by Andrew Pleasant PhD of Canyon Ranch Institute that summarises international health literacy activities. Learn more @

Many people are working hard to communicate health information more clearly. Strategies run the gamut from “low-tech” techniques such as writing in plain language and using pictures to “high-tech” options including audio and video teaching tools, interactive websites, and technology-based self-care devices. One resource to learn more about such strategies is my book, Health Literacy from A to Z: Practical Ways to Communicate Your Health Message, Second Edition, @

What’s next for health literacy? While of course the future is unknown, I foresee the development of many more strategies to improve how we communicate about health. I also hope that research will focus more of its attention on the economic benefits of communicating clearly rather than just looking at the costs of misunderstanding. Once we establish the business case for investing in health literacy, the movement can grow exponentially. And given the growing amount of international interest, I anticipate many exciting opportunities for worldwide partnerships, collaborations, and innovation. Indeed, we all truly are part of health literacy solutions.

HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 4 from that book

Saturday, November 17, 2012

Why doctors need to be politically engaged

This is a guest post by David Werner, Healthwrights. [email protected]

A few years ago, in the public market of the city of Mazatlan, Mexico, a thin, tired-looking woman with a sick baby in her arms approached me, asking for money to buy medicine. A doctor she had just consulted had told her that her baby had signs of pneumonia. And indeed the baby was breathing in short rapid breaths with flaring of the nostrils. She handed me a doctor's prescription for one of the newest, most expensive broad-spectrum antibiotics on the market.

"I spent nearly everything I had to pay the doctor," she said, "and can't begin to pay for this medicine."

"Were any lab tests done to find out what microbe is causing the infection?" I asked.

"No." She shook her head. "He just examined the baby and wrote this note."

I explained to the mother that the expensive new medicine the doctor had prescribed should be used only as a last option, and only after lab-work showed resistance to more standard antibiotics, which are usually safer, cheaper, and less likely to cause dangerous side effects. At a pharmacy, I helped her buy several adult-dose tablets of generic amoxicillin, which she could cut into pieces and mix with breast milk, to give her baby the recommended dosage.

This way, the baby was successfully treated at a cost for medication of about 1/20 of that which the doctor had prescribed. Many doctors, in deciding what to prescribe, give little thought to the fact that the prescription of an expensive new medicine, strongly promoted by the pharmaceutical companies, may in effect be a death sentence to the child whose family is too poor to buy it.

This experience hammered home once again a truth that has given direction to my work over the years: Health is determined more by social, economic, and political factors than by medical and preventive services. The corollary is obvious: Doctors -- if they are interested in promoting health rather than just treating illness -- need to be politically engaged.

This is not a new idea. Rudolph Virchow, sometimes referred to as "the father of modern pathology," said, back in the middle of the 19th century, “Medicine is a social science and politics is nothing but medicine writ large. If medicine is to fulfil her great task, then she must enter the political and social life. Do we not always find the diseases of the populace traceable to defects in society?”

Health literacy, in the broadest sense of the term, must include being informed and actively concerned about the social determinants of health. Most doctors are well trained in the biomedical aspects of disease but are "health-illiterate" when it comes to understanding how the larger social and political context impacts the health of their patients. This is especially the case when it is a matter of being aware of the underlying obstacles to health that weigh upon the less privileged half of humanity.

Most doctors come from relatively well-off families who have a very limited comprehension of the needs and struggles of the poor majority. It is not enough to pore through publications on the topic -- though that may be a good start. But it fails to provide any first-hand experience. If we are interested in training health professionals who are health literate, medical education should include an extended period of total immersion in a poor community, where doctors-in-training live closely with impoverished people and get to know first-hand the overwhelming complexity of the health-related difficulties they face.

A daring experiment. During the 1970s and '80s, a daring experiment of this kind of "immersion" took place in Mexico (where I have worked for decades in Community Based Healthcare and Rehabilitation). Called "Plan of 36," this experiment transplanted a group of 36 beginning medical students, for their entire first year, into Netzahualcoyotl, a huge slum community on the fringe of Mexico City. When this service-oriented initiative began, unemployment in "Netza" was over 60%. There was no running water or sewage system, and only one health centre for over a million people. On the first two days of "med school" in the slum, each student visited 30 destitute families (15 each day), asking them about their most urgent health-related needs and the difficulties they encountered in meeting them. Based on what people told them, the students with their professors planned their first year med-school curriculum. Training was designed to enable the students to help the slum dwellers they'd befriended cope with their health-related problems as best they could. Because most families were large, during that first year of medical school the 36 students provided basic health services, information and advocacy to more than 10,000 underserved people!

Although, for their remaining years of medical school, these students returned to a conventional hospital-based curriculum, what they learned during their first year's "total immersion" apparently stuck with them. Surveys years later indicate that the "health literacy" they'd gained had significantly increased their socio-political commitment to, and empathy for, the underdog. An unusually high percentage of these students, upon becoming doctors, ended up working in community health programmes and/or became activists promoting the health rights, environmental improvements, collective organisational capacity of los de abajo (“those on the bottom”).

By contrast, most doctors coming out of the conventional medical curriculum -- which is more concerned with sickness than with health -- joined, without question, the medical system that is profit-driven rather than health-driven. They saw little reason to try to change it. In this way they ended up becoming part of the problem. A prevailing profit-driven system leads to the suffering and/or death of millions of people every year -- mostly of impoverished people who have little voice in the decisions that affect their lives.
An example from the Philippines will provide us with a deeper understanding of what "health literacy" means, at community level. Several years ago I joined a group of health promoters from Latin America on an exchange visit to the Network of Community Based Health Programs in the Philippines. In a poor village on the outskirts of Tacloban we watched health workers in the Makapawa Health Program weighing babies to monitor their growth. Proudly they told us that in the two years since the program began, the death rate of young children -- which had been very high -- had dropped significantly. We asked why. The health workers thought it was because of the "health talks" they gave mothers about nutritious foods to give their children.

But the mothers there disagreed. "That's not so!" they insisted. "Nurses and health officers have come to our village for years, lecturing us about what foods we should give our children. We know all that! If we don't feed our kids properly, it's not because we don't know what foods they need. It's because we don't have the money to buy the foods -- or to feed our children enough!"

The mothers, however, agreed that their children were healthier and that fewer were dying since the health programme began. So we asked the mothers why. No one had a good answer. We asked whether their wages had increased or food prices had dropped -- but they said the opposite was true.

Next, the local health workers took us to see a project to reintroduce the use of traditional herbal medicines in the treatment of common ailments. In groups of 15 families, people would come together to prepare simple home remedies for coughs and colds, skin conditions, indigestion, aches and pains, and minor injuries. For diarrhoea -- the most common child illness -- they made what was essentially an oral rehydration drink, with correct amounts of sugar and salt, together with guava juice and crushed banana to add potassium and other needed minerals.

After the group demonstration, we talked with the mothers about the possible impact of their herbal remedies on health.

One mother said, "We use our homemade cures a lot for our children's ailments, and most of them get well."

"That way," said another mother, "we don't have to take the long trip to the city to see a doctor, and buy expensive medicine in the pharmacy."

Other mothers pointed out that, thanks to the homemade cures, they saved a lot of money on travel costs, doctor fees and medicines. With the money saved they were able to buy more food.

"Good lord! Do you realise what we're saying?" exclaimed a mother. "We're saying it was medical care that was killing our children! What we spent on the docs and drugs meant we had less for feeding our children!"

With a gleam of discovery on her weathered face, a grandmother with a little girl nestled beside her said, "So at last we know why our children are healthier! Now we've taken at least part of our health into our own hands, and we have more money for food."

And so it was that these village mothers -- though many couldn't read or write -- became more "health literate." They had begun to analyse and act upon the root causes of their poor health.

The experience of these village mothers in the Philippines is by no means exceptional. In many majority world countries -- and even in the United States -- one of the most common causes driving low-income families into absolute destitution is the high cost of medical treatment, especially for major illnesses or emergencies.

In the face of such examples, we must ask ourselves two key questions:

-- To what extent is medical care, as commonly provided today, an obstacle to health?    
-- How can ordinary people read the situation more clearly and take collective action?

Doctors and other health professionals who are truly concerned about the health of the people in their communities will necessarily find themselves proactively engaged with a number of different "political" issues that have an obvious impact on health:

Equity. Something is clearly unhealthy in a world where the gulf between rich and poor continues to grow, and where nearly half of the global population of 7 billion suffers from health-compromising nutritional problems. (Today over one billion people are chronically hungry while over two billion are insalubriously obese.)

Allocation of resources. In today's globalised economy, Death apparently has greater value than Life. The world's governments spend far more on the instruments of war and arms than on healthcare and education combined!

Access to medicines and services. Effective medicines and services are useless if geographical and economic factors put them beyond the reach of people who need them.

The need for universal health care. Doctors who are health literate, and want to become politically engaged, would to do well to join the growing popular demand for universal health coverage, so that families will no longer be at risk of having the cost of illness ruin their lives.

The central importance for health of such basic things as adequate calories, clean water, good sanitation and unpolluted air. The World Water Council reports that more than one out of six people lack access to safe drinking water. That's 1.1 billion people. More than one out of three (2.6 billion) people lack adequate sanitation.

The role of traditional health workers. To protect powerful economic monopolies, many countries have outlawed the "unqualified" practice of traditional healers, lay midwives, and others who provide care within the economic, cultural, or geographic reach of the poor.

Perhaps the matter can be best summed up by reflecting on the meaning of the term "politics." At its core, politics has to do with the distribution of power. For the most part, our present health system is run for the economic growth of powerful and lucrative monopolies (such as for-profit corporate hospitals chains, pharma companies, health insurance companies and medical device manufacturers) that place urgently needed, potentially life-saving attention out of the reach of millions.

Today 8 million children still die annually from easily preventable and treatable conditions because the world's ruling class does not give priority to the global goal of Health for All. For health professionals to become "politically engaged," means to actively advocate for a fairer, more compassionate, egalitarian society: one where everyone has a representative voice, and where healthcare, adequate nutrition, decent living conditions, and empowering education are basic human rights. As Dr Rudolf Virchow said over a century ago, “Medicine is a social science, and politics is nothing else but medicine on a large scale. Physicians are the natural attorneys of the poor, and social problems fall to a large extent within their jurisdiction.” If more of today's doctors would aspire to this political vision of Virchow, the practice of medicine would contribute a lot more then it now does to the goal of 'Health for All.'

HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 20 from that book

Friday, November 16, 2012

How can we use marketing strategies to promote Health Literacy?

This is a guest post by Hema Vishwanathan.

Advertisers are masters of the art of persuading people to buy stuff! How can we use their skills to help promote health literacy? What lessons can we learn from them? I have extensive experience in using marketing to promote public health and would like to share two examples. It is my hope that we can adapt these to promote health literacy as well.

There are some basic marketing ground rules:

•    Define and describe the target audience: The target audience needs to be defined clearly. Who are we addressing? Before communication can begin, we need to know who this person is (demography), where he or she can be found (geography) and how he or she can be reached (media).
•    Understand the target audience: All good communication begins with understanding the customer and looking into her needs, wants and expectations. Needs are both overt and subliminal. The world of advertising has mastered the art of addressing subliminal needs in subtle yet powerful ways. There is greater impact achieved through touching the more subtle needs than the more overt needs.
•    Decide on the message and keep it simple: The third requirement is to get clarity on the message that we want to deliver. What do we want to say? What does the consumer (patient/ audience) want to know? Somewhere in the wide gap between what we want to tell and what they want to know, we need to find common ground. The point where these intersect offers a starting point for communication because the conversation can then begin with what the consumer wants and then lead to what you want – it is only when communication starts from a point of mutual interest that it has any hope of going forward in a productive way.
•    Say it again and again: The fourth reality is that communication needs to be repeated – again and again. Messages do not go out easily, even when talking one-on-one. There are gaps between the intended message and message received by the listener; there are gaps in attention and perception; there are distractions – and this is when you are sitting and talking to one person. When mass communication beams out messages to millions of people in an impersonal situation, the gaps are huge. In addition to all of the above – attention, intention, perception and distraction – there is the huge problem of noise. Hundreds of messages are trying to reach out to the same person – and he really does not want to listen to any of them. They are trying to grab his attention at a time when his interest lies elsewhere – whether on a TV channel, on the radio, through the print media or through the outdoor media.
•    Use the magic of modern communication: The fifth reality is that all of our earlier knowledge about marketing and communication has been churned beyond recognition by technology. Communication today is a different ballgame. It is continuous, instant, hydra-headed and with multiple arms, and so ambidextrous that it often defies comprehension and measurement. Today’s flavour of the month can become a billion dollar blockbuster – or end up in the garbage – and it’s impossible to predict this with any accuracy. The good news is there are now myriad opportunities to reach out to the consumer – through the Internet, the mobile phone, through search engines, messaging, and free apps. The opportunities to connect have multiplied and become omnipresent.
•    Get the policy makers on your side: Finally there is the one item that is all-important in the field of public health and that is political will. It is the magic wand that can make all the difference to public health. In fact, without political will and the policy decisions that follow from political will, all public health efforts will amount to zilch. With the government on the right side of public health requirements, anything is possible. In fact I would say that for public health, policy is the first and most important requirement – everything else can follow later. Of course, getting the right policy decisions is in large part a function of luck. Everything depends on having the right bureaucrat in the right place at the right time. If you are lucky to get someone who is willing to listen and to understand and is focused on improving public health, half the battle is won. Without this kind of a person in the chair, all well-meaning efforts are likely to go down the drain very quickly.
Our first case study begins in the mid-1980s when WHO was concerned about the number of childhood deaths caused by diarrheal disease in India. WHO had made the assumption that these deaths must be happening because mothers were ignorant and had probably stopped giving the child food and fluids when he/she got diarrhoea, in an attempt to stop the diarrhoea. A communication strategy was being planned on the basis of these assumptions when some senior officers at UNICEF decided that the assumptions needed to be checked out. I was fortunate to be in charge of the nationwide research study that sought to understand what mothers actually did when the child developed diarrhoea. In the first phase of the study, we went to mothers from over 150 villages spread across the country and asked them: “What would your grandmother have told you to do when a child had diarrhoea?” That simple question revealed a long list of fluids and semi-fluid options that completely stunned the decision-makers who had assumed that mothers would be ignorant. It revealed that the traditional knowledge on the subject of rehydration was excellent. We found that mothers knew about rice water, dal water, buttermilk, barley water, breast milk, coconut water, khichdi, sago porridge… the list was long and rich. The tradition was and had always been to give fluids and semi-solid foods to a child during diarrhoea.

But why, then, were children dying of diarrhoea and dehydration? If the knowledge was so good, what was the problem? The second phase of the study looked into what mothers had actually done in practice. So we went to nearly 10,000 mothers across the country whose child had had diarrhoea in the last 15 days and asked them: “What did you give to the child when he had diarrhoea?” The answers were again stunning – mothers had given nothing other than tea, milk, water. The rich tradition of rehydration, about which there was still some residual knowledge, had in fact been lost in practice. Lack of time, lack of conviction and the desire to be modern had led the women to shun “grandmother’s methods”; yet there was no equally effective alternative available known to the mother in today’s methods.

The study also found that mothers were unimpressed by the idea of giving a homemade sugar-salt solution to the child. This lacked the impressive scientific aura of expensive medicines, or even better, of injections. If she must do something at home, we realised, she would prefer to open a packet of ORS. In addition, we tested (and found) that it was difficult to get her to add the right quantity of salt to a litre of water.

Armed with all this data and with the help of the Health Secretary, the findings were presented to the Parliamentary Consultative Committee on diarrheal disease. These were accepted and the revised National Diarrhoea Management Plan was drafted to place major emphasis on well known, localised, home available fluids and soft food as well as on breast milk for infants; in addition, the child was to be given ORS. ORS had recently, at that time, been deregulated and made available over the counter (OTC). The revised NDMP planned a major social marketing effort to make ORS widely known and available.

That formed the starting point of a major communication campaign carried out by the Ministry of Health during the period from 1988 to 1998. Television channels beamed out messages on Doordarshan as well as on other popular channels reminding mothers that some of the best remedies for diarrhoea were to be found right there in the kitchen, remedies that had been known to Indian mothers for many centuries. The advertisements reminded mothers of a large range of home-based fluids that would be best for the child when the child developed diarrhoea. In addition, she could also approach her nearest health worker for a packet of ORS and keep the child continuously rehydrated.

The campaign worked very well and there was a clear decrease in diarrhoeal deaths after this campaign.

The second case study is about communication to promote Infant Immunisation. When the Government of India decided to adopt the Universal Immunisation Programme (UIP) into the public health programme in 1987-88, it set up a Technology Mission to ensure the successful roll-out and adoption of this program. It was planned as a phased roll-out, with the first pilot being carried out in 12 districts across the country. Once again, I was fortunate to be in charge of the research to assess problems related to programme dropouts. The UIP schedule was initially started as a five-point schedule – Anti-tetanus injections during pregnancy, BCG at birth, DPT and Polio in three rounds before the age of six months and then measles towards the 9th month of the child’s life. The problem in the initial pilot phase was that mothers tended to not finish the course.

Our study found several problems that were operational and attitudinal in nature. To the credit of the Technology mission, the operational problems were not just understood immediately but they were accepted and acted upon, then and there, as the results were being presented. Sam Pitroda and Jairam Ramesh took decisions on the spot and communicated the desired action to the health ministry officials sitting in the meeting. It was a joy to watch the process, because of the power vested with the technology missions and the decisiveness with which action was taken.

However, we realised that an important part of the job would be to convince parents that it was indeed important to get the child immunised. In addition, communication was needed to persuade grandparents, who resisted these new-fangled requirements and resented the fact that the young daughter-in-law had to leave her housework and go to the health centre on so many occasions. The idea of disease prevention did not cut ice. Not only was there resistance to the idea of giving an injection to the child when he/ she was not ill, it seemed ridiculous to the mother (and grandparents) that the child actually seemed more ill on the day after the injections. The idea seemed backwards – to take a healthy child and get him injected and then have him feel unwell the next day!

Those who were working on communication knew that the results would only be visible 20-30 years down the line - and it gladdens my heart when I go into villages today and the villagers tell me, spontaneously, that children do not fall ill as often as they used to. But at that time, it was difficult to persuade mothers to accept the idea. Communication was needed to persuade all the stakeholders, but most importantly parents and grandparents, that a newborn should be immunised.

As part of a follow up study that was being carried out on the subject of immunisation, we added a question “Which do you fear more in your child – disability or death?” Over half of all respondents said that they feared disability more than death. This was even truer in the case of a girl child. If a child became disabled, the worry and difficulties lasted for the lifetime of the parents and beyond; the worry of what would happen to the child after the parents were gone would haunt a parent at all times. In addition, it could spell financial disaster for a poor family. While a child’s death was also deeply feared, the idea of a child becoming permanently disabled was much more traumatic because it was felt to be a fate worse than death.

This insight provided the communication handle that we needed. It was decided that communication would play on this fear of disability and use polio as the leading message. Posters and advertisements used pictures of a young boy severely disabled by polio. The simple message was – prevent this from happening to your child by getting your child immunised today. The communication worked. This message (along with actions taken to iron out logistical problems in vaccine delivery) saw the acceptance of UIP rise systematically over the years. Today we have over 75% of infants being covered by BCG and DPT 1. It has taken a lot of effort beyond the communication campaign started 20 years ago, but it is still a joy to learn that India is gearing up to be declared polio-free by 2014.

It takes time, energy and imagination to craft the right message and the path to success is likely to be littered with failures. The good news is that there are enough success stories we can learn from that we can tackle the problem of health literacy effectively.

HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 4 from that book

Thursday, November 15, 2012

Promoting Health Literacy - Spread the word!

On October 1999, Helen Osborne launched the Health Literacy Month. It has been celebrated every year since, in events large and small, all over the world. Health literacy can be promoted through a wide variety of venues, including:

•    An event at the hospital
•    A workshop for clinic personnel
•    A library’s sharing of effective patient education materials
•    An employer-sponsored health fair

Ms Osborne has written an excellent manual for anyone considering promoting health literacy: Health Literacy Handbook. The Event Planning Guide for Health Literacy Advocates. You can order a copy @

Here are some suggestions when considering and planning a health literacy promotion.

Planning your promotion

Before you begin, you’ll want to put some thought into what you hope to achieve as a result of your event. Is there a current health problem or issue in your area that needs special attention in terms of low-literate patients? For example, are you seeing more patients from the slums coming to you with injection abscesses because of unsafe injection practises? How can you teach them the dangers of unnecessary injections? Once you know your goals, you can choose the best way to conduct your event to achieve those objectives.

If you are planning a community-based event to promote health literacy in your neighbourhood, then partnering with other organisations (such as local pharmacies, clinics, hospitals and the government primary health centre) is essential. It is important to include people from a variety of areas in your planning, including your end users: people with limited literacy skills.

What type of event should you have?

What will people do at your event? Your answer to this question will, of course, depend on your objectives. If your objectives are to increase general awareness, you may wish to have one or more presentations about the issue of health literacy and what can be done about it. If you would like your staff to learn how to communicate in “plain language” with patients or have them learn the “Teach-back” technique, you will probably want to have a workshop or two in which you teach these skills and provide hands-on practice.

While you can host a health literacy event at any time, there may be other events going on in your area that would support your initiative and perhaps result in greater attendance or a larger impact overall.

If an organisation in your area is already having an event on one of the many international health awareness days such as World Heart Day or Rose Day, then you can join with them!

Similarly, if a hospital is organising a free health check-up camp; or a Rotary Club is arranging a blood bank drive, you can piggy back onto this by providing a booth or speaker on promoting health literacy. This approach may be an excellent avenue for your first promotion, because you won’t have to organise the whole event – just your part of it.

Promoting your event

This can be quite challenging, because health literacy is not considered to be a “sexy“ issue. Try roping in a celebrity as a spokesperson, so you can attract media attention. Promotion possibilities include:

•    Creating flyers or posters that can be posted on community bulletin boards.
•    Sending notices to community-based websites for inclusion on their event calendars.
•    Creating an eye-catching graphic for your event.
•    Creating press releases for local newspapers.
•    Inviting the local media (radio, TV) to attend your event.

Evaluating your event

Once the event is over, you will want to assess its impact and the success you achieved in accomplishing your initial objectives. This will help you do a better job the next time you organise similar events – after all, promoting health literacy is an on-going task!
HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is Chapter 16 from that book

Wednesday, November 14, 2012

How promoting health literacy can help pharmaceutical companies to improve patient compliance

A major problem for patients with low literacy is managing their medications. Many people, especially the elderly, take multiple medications, in varying doses, and at different times during the day. These medicines often have side effects, and some can cause complications by interacting with each other.
Pharmaceutical companies are required by law to provide patients with medication information in the package. These leaflets are supposed to help patients take their medications properly. However, most leaflets have the following problems:
•    Small text, crammed together
•    Poorly printed, small, hard-to-decipher warning labels symbols
•    Unclear, non-standardised instructions
•    Complex language that can be hard to understand
I wonder how many patients even bother to read these leaflets, leave alone understanding what they read.

The information doesn’t seem to be designed with the patient in mind at all. It appears that pharmaceutical companies print leaflets just to comply with the law and to protect themselves from lawsuits should the patient suffer from a complication as a result of the drug. Not only does this represent a missed opportunity to teach patients; unintelligible leaflets are actually a potentially grave risk to the health of patients, who are often clueless about the side effects and complications of the medicines they are taking because the leaflets are unreadable.

There are some great examples of well-designed patient information leaflets @ These serve as a very good model for how pharmaceutical companies can teach patients with poor literacy the information they need to know about their medicines. The pharmaceutical industry needs to adopt the motto: “Educate before you medicate!”

Fortunately, things are changing for the better. European law now states:

“The package leaflet must be written and designed to be clear and understandable, enabling users to act appropriately, when necessary with the help of health professionals.” (Title V of Council Directive 2001/83/EC (as amended) Article 63(2).)

The UK Medicines and Healthcare Products Regulatory Agency (MHRA) has also issued guidelines to help improve these package inserts:

•    Use plain language, simple punctuation, short paragraphs, and bullet points
•    Use an easy-to-read font
•    Use headings and colour to help patients navigate the text
•    Consider the use of simple, easy to understand symbols and pictographs

The full guidelines can be accessed @:

HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is a section from that book

Tuesday, November 13, 2012

Using PHRs to improve health literacy

Ideally, the results of blood tests, X-rays, diagnostic scans and other information needs to be provided to patients in the right context, so they can track it and make sense of it. The best way to do this would be upload it to the patient’s EHR (electronic health record). A personal health record (PHR) is an online tool
(@ which can help to increase health literacy and transform patients into better-educated consumers of healthcare. The PHR allows us to put the I in HealthIT! The information in PHRs is portable, protected and private, and its ownership lies solely with the patient. The key to success is to ensure that the information is displayed in a format that is easily understandable for the patient. Further research is needed to develop a user-centred interface design for EHRs, which provides them with a dashboard that displays basic information, and enables them to “drill down” for the relevant details they want to explore. While it’s easier to teach educated patients how to utilise this information to make decisions, patients without an adequate understanding of their own healthcare may be overwhelmed and discouraged when presented with a PHR. However, this is actually a great opportunity to improve their health literacy because a major advantage of the PHR is the ability it affords the patient to be an active member of the medical team and not just a passive consumer of healthcare services. An active team member will seek to understand the content of his own PHR. This desire can serve as a powerful motivating force in improving their personal health literacy, especially when the doctor prescribes customised information directly to the PHR, to help patients make sense of their reports. Not only do PHRs provide patients with health information at their fingertips, they make it easier for patients to connect online with their doctors through patient portals. By encouraging patients to ask questions and find out more, their health literacy improves, and health outcomes are better.

While it is true that patients with low health literacy will require extra help to learn to use their PHR, it is a worthwhile investment in their lifelong health. The personal health record (PHR) can actually increase social capital in the form of better doctor-patient relationships and improved health literacy. Patients are the largest untapped healthcare resource and PHRs can help them to manage their own health. The PHR that Kaiser Permanente offers it members, My Health Manager, is one of the biggest success stories in healthcare. It has reached four million users, and over the past year, users have accessed the portal more than 100 million times. The Blue Button initiative, rolled out recently by the US government, which allows users to download their personal health data at the click of a button holds great promise, because it encourages transparency and empowers patient with information.

HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is a section from that book

Monday, November 12, 2012

How medical diagnostic companies can help to improve health literacy

We are accustomed to having blood tests done when we go to our doctor because they provide important diagnostic clues about disease. Lab tests offer the doctor a window into your body and when the pathology laboratory translates your blood into a stream of numbers, units and acronyms, your doctor can analyse this data to make the right diagnosis. However, most lab reports don’t seem designed to provide you with any intelligible information whatsoever. The typical blood test report is an exercise in obfuscation, a document that needs to be interpreted by a physician. However, lab reports don’t have to be unintelligible. With some thought, the results can be displayed so that they are as informative to patients as they are to physicians. Patients need to be able to understand their blood test “numbers”, so they can translate this knowledge into action, and become participants in their own health.

Let’s look at blood sugar levels for example. Diabetics need to monitor blood sugar levels continuously, and every diabetic knows that better control means better health and lower medication costs. The blood sugar report should help the patient and his doctor manage the disease. However, rather than just providing a single blood sugar level number, it would be much more helpful to the patient if serial values were provided in the form of a graph, so the patient could clearly see how well he was controlling his sugar levels. The good news is that even though labs still don’t do this, clever websites such as SugarStats (@ allow patients to track their blood sugar levels free of cost. This is a valuable online diabetes management tool – and similar sites need to be developed to manage other chronic diseases as well.

HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is a section from that book

Sunday, November 11, 2012

Health literacy, diabetes and pharmaceutical companies

It's heartening to see that pharma companies in India are investing money in educating patients about diabetes. MSD took a full page advertisement in the Times of India on World Diabetes Day, to create more awareness about the disease. India is supposed to be the diabetes capital of the world, and since diabetes is a chronic, lifelong disease pharma companies understand that there is a lot of money to be made in treating these patients. This is why it makes business sense for them to invest in patient education ; and I am pleased that they are now reaching out directly to patients to empower them with information. Diabetic patients need information , and pharma companies have the deep pockets to be able to use the mass media to reach out to them effectively.

However, there are some major lacunae with the advertisement. For one, it did not feature a single expert patient. While it’s important to listen to what diabetic specialists have to say about the disease, isn’t the viewpoint of someone who has successfully lived with the disease for many years equally
important ?

Also, there is no reference to any educational website  in the advertisement. This is a tragic waste of a huge  opportunity ! Information needs to be provided on an ongoing basis, and this is best done online. Patients could have easily been provided with website addresses or QR codes, which they could have bookmarked, so they would continue to get updated knowledge. Educational efforts cannot just be a one-off full page expensive advertisement in a newspaper - they need to be run as digital campaigns, so they can reach patients where they are - at their homes, through SMSes, smartphones and PCs.

It’s high time pharma companies in India invested in promoting health literacy. Diabetes is something which we can effectively treat , but we cannot cure.  Since it's a chronic, lifelong disease , it's very hard for patients to remain motivated over the long-term , and a lot of them will dropout of treatment.  They will not follow up with their doctor; or will not do the tests they are asked to , until they suffer from a complication. However, by this time, the damage has already been done ! Poor compliance is a major bugbear for doctors and pharma companies ( and the spouses of diabetics as well !) , because it's not much fun to stick a needle into your finger in order to check your blood sugar; or to have to follow multiple restrictions about your diet and your exercise. For many diabetic patients, life seems to have become a long lists of  “do’s and don’ts” !

While doctors are quick to complain that patients do not follow their instructions, part of the problem is that doctors continue to issue orders to their patients , without investing the time and energy in explaining to them why they need to follow these instructions. Since diabetes has no symptoms , and since the complications which it causes occur after many years, it's very easy for patients to cut corners and be indisciplined. This lack of compliance ends up hurting the pharmaceutical companies as well. If patients do not check their blood sugars regularly, or they do not take their insulin because they are needle phobic, this reduces the sales of insulin and hurts the pharma company’s profitability.

While pharma companies have done a great job in teaching doctors about the new types of insulin molecules and how they need to be administered in order to control blood sugar effectively over the long term , they need to spend money in educating and coaching patients as well, so that they can learn to manage their diabetes for themselves.

The good news is that it's possible to motivate diabetic patients to take better care of themselves. Pharma companies need to learn to put patients first , and the most effective way of doing this is by promoting health literacy by investing in information therapy. This is a great opportunity for a forward thinking company to create a win-win situation , for themselves , for diabetic doctors , and for their patients as well !

Why health insurance companies need to promote health literacy

Patients buy health insurance because they understand that costs of health care are rising and they need to protect themselves if they fall ill. Most assume that if they have medical insurance they are going to be able to afford medical care if they need it. Sadly, this is not always true. When you buy a health insurance policy, the friendly company agent is very happy to come to your house, take your signature on the health insurance form, and collect your premium. The company will also faithfully send you annual reminders for your premium payments. However, when it’s time to submit your claim for reimbursement of medical expenses, things can get quite hairy. The processes at health insurance companies seem to be designed to reject as many claims as possible, no matter how legitimate they maybe. This is hardly surprising, because health insurance companies are profit-making, and the longer they can hold on to your premiums (their “float”), the more money they stand to make.

It is only when your claim gets rejected that you start to carefully study the health insurance form you signed many moons ago. You find it is full of baffling terms, including “exclusions”, “co-payments”, “deductibles “, “pre-existing conditions”, and "usual, customary, and reasonable charges" – terms that sounds like Greek and Latin and which your agent never bothered to explain when collecting the premium. Insurers seem to be deliberately keeping their customers in the dark by burying all the exclusion clauses in masses of fine print. The reason they do this is simple – it’s all about money. The forms are designed to purposely obfuscate: to make the claim process so difficult that people give up on pursuing their claims, even if they are valid, because they cannot cope with the hurdles the insurance company places in their path. This is hardly surprising, since the forms are designed by health insurance company lawyers, to protect the interests of the health insurance company.

Make sure you disclose everything that is required in the form - please do not sign a blank form and leave it to the agent to fill the form later. If you do not disclose a pre-existing disease then you run the risk of your policy being cancelled or a renewal being denied if this fact is discovered later. Keep a copy of all documents submitted to the insurance company for your future reference and remember that any promise made by the agent or even an official of the insurance company has no value unless it is in writing.

The US government has now taken concrete steps to ensure that patients can make sense of what their policy covers and what it does not. The Affordable Care Act – the new health reform law – requires health insurers to provide concise and comprehensible information about health plan benefits and coverage. In India, patients are much more vulnerable and the Consumer Dispute Redressal Forums are log-jammed with unhappy and angry patients who feel cheated because their insurance company has refused to pay claims on all kinds of flimsy pretexts.

HELP is organizing a conference on “ Putting Patients First Through Health Literacy  “. This will be on Sunday, 2nd December’12 at Nehru Center at 10.30a.m. to 1.p.m.  The website is

The conference will be followed by a health literacy workshop in the afternoon. Helen Osborne, President, Health Literacy, a world renowned  Consultant from US , will be delivering the keynote and conducting the workshop.  Her website is at

At this time, we will be releasing the book, Deciphering Medical Gobbledygook: Promoting Health Literacy to Put Patients First , authored by Dr Aniruddha Malpani and Juliette Siegfried. This is a section from that book

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