PATIENT RESPONSE: Giving Voice to the Patient

This Chapter was contributed to our book, Using Information Therapy to Put Patients First by Leslie Kelly Hall, Senior Vice President, Healthwise ; and Don Kemper, CEO, Healthwise

Dr Jones runs a thriving cardiology practice. Apart from being a very competent doctor and an expert in his field, there’s an all-important ingredient in his formula for success – Patient Response. Dr Jones’ team uses EMRs ( electronic medical records) which are accessible to the patient through a patient portal; and ensures that appropriate feedback is obtained after every consultation. Patients are proactively asked if they have any concerns about their treatment plan; and regular emails are sent to ensure that patients are coping well . This active involvement of patients in their treatment is what truly sets him apart from many other well-meaning doctors.

The greatest untapped resource in healthcare is the patient. More often than not, an engaged and activated patient can make the difference between healthcare success and failure.
Through Electronic Medical Record (EMR) systems, we have begun to tap that resource by prescribing information to the patient just in time to help him or her make a better health decision or to support a higher quality of self-care. Still, there is something important to consumer empowerment that is missing.

• It’s true that people can ‘pull’ a full array of medical information and decision-support tools from the Web.
• And, increasingly, doctors can ‘push’ the most relevant information and tools for each individual patient through their electronic medical record systems.

But today, there is no good way to get the patient’s voice captured within the medical record. Until we can ‘pay’ better attention to the patient’s perspectives, much of the patient’s potential will continue to go untapped. Pull, push, and pay strategies are all needed to maximize engagement.

Patient response is a new way to ensure that the patient’s voice is well heard in creating care plans, in deciding among treatment options, and in advancing the doctor-patient partnership. With patient response, patient-centered care becomes possible. Only by paying attention to the values and preferences of our patients can we achieve sufficient patient engagement to put the patient at the center of care.

Patient response defined:
• Short definition: ‘Patient response’ is the documentation of the patient’s preferences and responses to physician’s requests within the clinical record.
• Full definition: ‘Patient response’ is the documented record of a patient’s treatment, care plan, self-management, and health education preferences and responses to clinical and administrative questions, presented in the clinical record using HL7 standards, to help the clinicians support shared decision making and patient activation. Such a patient response is usually, but not always, in direct reply to a clinician’s information prescription or query to the patient.

Patients who are actively involved through information prescriptions and patient response will make better care plan decisions with their doctors and be more successful with self-management actions at home. Physicians who ask their patients to do more self-management and shared decision making can achieve better clinical outcomes, raise patient satisfaction, and reduce the cost of care. When patients are involved and informed, they can ask for the care they need, say ‘no’ to care they do not need, and do as much for themselves as possible. There is no better way to engage patients than to assure them that their voice will be heard in treatment and care plan decisions.

The Stage is set for Patient Response
Stage 1 of the Meaningful Use rules is helping to define new ways in which electronic health records (EHRs) and related health information technologies (HIT) can more actively engage patients in their care. Meaningful Use rules require that clinicians prescribe ‘patient-specific educational resources’ through their EHR systems. They also require hospitals to send discharge summaries and preventive services reminders to patients. These rules will help more patients to receive the information and tools they need to play a more effective role in their own care. This information prescription phase is a necessary step toward full patient engagement.

One-Way information is not enough
While informing patients is a key step in unlocking the patient’s potential, one-way information—by itself—is not enough. Until the physician can see, in the clinical record, the patient’s response to a query or decision aid, there is little chance that the patient’s voice will be heard. Patient-centered care will never be attained until the patient’s voice is in the clinical record and the doctor pays attention to it.

A ‘Patient Response’ is much like a medical test result
You can think of a patient response as being much like a medical test report that comes back into the record for the clinician to use in making a better diagnosis or treatment plan.
• Just as the test is done at the clinician’s request, so, too, is the patient response done in reply to a physician’s request, query, or information prescription.
• Just as the test results come back to a predictable place in the patient’s record and in an expected format that is easy for the clinician to quickly scan within a time-limited workflow, so, too, is the patient response presented in a predictable place and expected format.
• And just as an automated analysis of a medical test highlights test results that are out of normal range, so, too, does an automated analysis of the patient response flag any aspects that are important to the care plan development.

Use cases for Patient Response
Physicians are often blind to what their patients are thinking. Did I answer all of her questions? Is he planning to change his diet to prevent diabetes? Does she agree with the care plan? Did she have important symptoms that I didn’t ask about? Is she also using complementary medicines to manage her complaints? Too often there is just no time in a clinic visit to probe for the answers.

Patient response can improve the doctor-patient relationship and care outcomes by promoting empathy. With patient response, the doctor gets to learn the patient’s perspective in a short time, and the patient gets the satisfaction of knowing his voice was heard. Both enjoy the rewards of improved medical outcomes.

Here are five examples of patient response with benefits for both doctor and patient:

1. Pre-visit summaries. Pre-visit summaries are patient responses to a set of questions sent to a patient in advance of a visit. The questions are specific to the reason for the visit and interactively probe the patient’s symptoms, concerns, level of knowledge, and expectations for the visit. By starting with a succinct summary of the patient’s responses, the doctor can get to the point of the visit faster and serve the needs of the patient with more time available for education, motivation, and joint care planning. Pre-admission summaries can do much the same for improving the quality and efficiency of hospital admissions, so patients don’t have to waste time filling in multiple forms . A patient response to acknowledge patient readiness, including receiving necessary forms and consents, increases patient involvement and improves the hospital’s efficiency.

2. Patient-specific education materials and self-management learning programs. When a clinician sends the patient an information prescription or self-management program, it is important to know if the information or program is making a difference. If requested, patient response provides information back to the record regarding:
a. Whether the material was read.
b. Whether the program was completed.
c. What self-care actions were started or planned.
Patient response allows the physician to appreciate successes, empathize with struggles, and provide motivation for additional efforts.

3. Patient decision aids. Shared decision making has been shown to improve patient outcomes and satisfaction while lowering costs. However, the value of a patient’s use of a decision aid is diminished if patient insights gained from the decision aid never get back to the physician. With patient response, physicians can quickly assess if the patient is ready to make the treatment decision and what patient preferences and concerns should be considered in the decision process.

4. Medication and preventive services adherence. Patient response helps the physician know if and why a patient has either not filled or not taken a prescription medication. It also allows for fast, structured reporting of symptoms related to drug interactions or reactions. Without learning why a patient is not taking a prescribed drug, a clinician has little chance of achieving adherence. Patient response to preventive service reminders can also alert clinicians to why they are declined and whether additional information is needed.

5. Advance care planning. Advance directives are another form of a patient response. By implementing advance directives using patient response standards, this documentation becomes more accessible to the patient, more available to the clinician, and more easily transferred to those who have a need to know them.

Patient response implemented across a spectrum of uses such as those described above will enhance the doctor-patient partnership and encourages patient input to a shared care plan. And with a bit of creative thinking, we can motivate higher degrees of patient accountability by tracking patient responses.

Patient Response and Quality
Patient response supports quality initiatives in many areas of policy, reform, and health improvement. Consistent with the government’s Partnership for Care to provide better care at lower costs, patient response provides a concrete way to bring together patients and their caregivers. Patient response can validate that the patients and their families understand how to be safe from hospital-acquired disease; that the care plans are understood; and that instructions given to patients are acted upon as they transition between care settings and home.

When patients are allowed to report on their care experiences, quality-reporting initiatives are supported and customer service improvement opportunities are created. Patient response allows for patient participation in research and surveys in a meaningful way, integrated within existing workflows.

Standardizing the Patient Response
Observations and results provided to clinician orders are a fundamental feature in all EHRs. Thousands of these transactions move within any one hospital, hundreds of thousands between providers and labs, and millions across large integrated delivery systems, on a daily basis.

To maximize mainstream adoption, the existing HL7 technology standards and interoperability framework must be enhanced to integrate patient response into the clinician’s current workflow. The case for building on existing standards is a strong one:
• Ease of integration. Contextually aware patient-specific data is already available and easily transitioned to incorporate patient response.
• Existing practice. Orders, observations, and results are already widely adopted and familiar. They are easily enhanced to incorporate patient response.
• Mapped to episodes of care. Just as medical test results are matched to a specific episode of care, so the information prescription and corresponding patient response can be matched.
• Automated analysis and flagging. Automated analysis and flagging will make patient response an added blessing to the workflow of a clinician. A quick glance at the flagged responses will tell much of the patient’s story that is now available only through extended conversation well beyond today’s workflow limits.

At Last, a reason for the public to embrace EMRs
Until now, the public’s response to their $30 billion investment in EMRs has been less than enthusiastic. Their biggest concern is that someone will steal their data and they don’t yet see a compelling benefit to justify the risk. The combination of information prescriptions and patient response will dramatically change public opinion about the value of EMRs. People have concerns about electronic banking as well—but their fears are overpowered by the convenience that electronic banking gives them. In the same way, when people experience how being an informed, engaged, and respected member of the healthcare team helps them to get better care, their fears of the harms from medical data theft will be greatly moderated.

Conclusions
At this point, patient response is just a gleam in the eyes of a handful of healthcare innovators. However, the path from idea to reality can be travelled quickly. It took less than 10 years from the publication of Information Therapy to the publishing of the Meaningful Use rules that took information prescriptions mainstream. And now that information therapy has paved the way for patient response, its road can be travelled far more quickly.

To make this happen, work is needed in three areas:
1. Standards enhancement. People who have HL7 standards experience can join in an effort to modify existing standards to allow for the new functionality of patient response.
2. Policy development. People who have the ear of the government can promote the value of patient response as being essential to real meaningful use; patient-centered care; and the triple aim of better care, better health, and lower cost.
3. Use-case application development. People who have a passion for each of the patient response use cases described above can develop and test applications that can be integrated into EMR systems to achieve breakthroughs in the evolution of accountable care.

If we want patients to behave as empowered partners in their own healthcare, we need to respect them. Patient response is a great tool which allows patients to speak up—and doctors to listen!

HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.


This will be held at Nehru Centre on Sunday, 9th October’11 from 10.30 am - 1.30 pm . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.

Why do doctors make patients wait for so long ?

One of the commonest complaints patients have about doctors is that they make them wait too long.

It is true that good doctors are extremely busy. They have lots of patients who come from all over country and queue up patiently for hours on end, in order to see them. In fact, as a wag pointed out , this is the reason why patients are called patients - waiting in the doctors waiting room can teach you how to become patient very quickly !

All this waiting makes patients impatient. They get fidgety , irritable, upset and angry. They feel that the doctor does not respect their time, and when it is finally time for them to see the doctor, they feel short changed and cheated because they feel that the Doctor did not devote enough time to addressing their complaints, because he had so many more patients waiting to see him . They feel that this excessive waiting results in their getting poor medical care.

So why do doctors make patients wait for so long ? Most patients feel that the answer is obvious – it’s because doctors are greedy and the reason they overbook is so that they can earn more money.

However, let's look at this from the doctors point of view. Doctors take pride in the fact that they work so hard for such little money - and many will often see patients until the wee hours of the morning. They feel that their personal clinical skills are exceptional and that other doctors simply cannot provide the same high quality of care which they can. They want to help as many patients as possible, which is why they give so many appointments - so that they can share their knowledge and provide high quality medical care to as many patients as possible . While patients get angry at having to wait, for most doctors a long line of patient patients is a major status symbol of success . The fact that patients are willing to wait hours on end in order to see them just reflects that they are on the top of their profession.

Ironically , patients also contribute to this over busyness on the part of doctors. They feel that the fact that there are so many patients waiting to see the doctor just testifies to the fact that this doctor must be very good ! The busier the doctor , the more willing they are to wait in order to see him, setting up a vicious cycle !

Actually I think long wait times just reflect poor time management on the part of the Doctor. While it's true that certain consultations will take much longer than the doctor expects, and that clinical emergencies may cause the doctor’s schedule to get disrupted, when doctors routinely make patients wait for hours on end for no good rhyme or reason, it just means that they do not respect their patients enough.

So what's the poor doctor to do ? Lots of doctors will try to manage their time more efficiently , by asking patients to wait for an appointment , but unfortunately this does not seem to be a happy solution either because patients hate having to wait for 4 to 6 weeks in order to see the doctor. They want instant medical attention now !

The only way to overcome this bottle neck, which is a result of the skewed doctor-patient ratio, is to enhance the doctor’s productivity by using tools and technology so that he can reach out to more patients efficiently , without their having to actually physically come into his clinic in order to see him.

Websites ( with structured medical forms which the patients need to fill out) are a very efficient way of making patients do more of the work, so that the doctor can take care of more patients effectively.

Information Therapy to tackle non-communicable diseases

The Times of India reported that India is planning to roll out the world’s largest non-communicable diseases drive. As many as 26 "mini interventions" will make up the world's largest programme to combat non communicable diseases ( NCDs) that will be launched by India soon.

However , as usual the government seems to be barking up the wrong tree by pumping in money to open more healthcare centers and do more testing.

The only way long-term cost-effective sustainable solution to tackling this huge problem is by providing Information Therapy to Indians, so they can prevent these problems, most of which are related to an unhealthy lifestyle.


This is why HELP is organising its 2nd Annual Conference on Using Information Therapy to Put Patients First in India.

This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.

How to improve your doctor's communication skills !

Most patients ( and truthful doctors !) will agree that doctors just do not have the luxury to spend 30 min talking to each patient, much as they'd love to . This means that patients are starved for reliable information about their medical condition - and good doctors are unhappy that they have not been able to communicate properly with their patient because of a lack of time.

Here's an effective solution - ask your doctor to prescribe information ! It's no longer enough to just prescribe medicines !

How does one prescribe information ? Find out more at HELP's 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.

This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.

Bring your doctor along !

Pharmaceutical companies in India need to provide Information Therapy !

Dr Alate, CEO, Ferring India talks about how and why pharmaceutical companies in India need to provide Information Therapy !

Dr Alate will be presenting at HELP's 2nd Annual Conference on Using Information Therapy to Put Patients First in India.

This will be held at Nehru Centre on Sunday, 9th October’11 .

How pharmaceutical companies in India can provide Information therapy

View more documents from Aniruddha Malpani

Doctor, why can't I ejaculate ?

Many men ( and gynecologists as well !) confuse erectile dysfunction and ejaculatory problems. Dr Rupin Shah is the male infertility specialist ( andrologist) at our clinic. This excellent article dispels a lot of myths about this common problem, which is commonly misunderstood and improperly treated.

Anejaculation is the inability to ejaculate semen despite stimulation of the penis by intercourse or masturbation. It can be very distressing to a couple trying for a child - especially when it's not diagnosed properly. Most gynecologists are not comfortable dealing with the infertile man and will often just refer him to a urologist or andrologist. Please remember that this is a very real problem - it's NOT " all in your head " !

Since it's not a common problem, and is often confused with erectile dysfunction, let me describe this is in more detail. The man has normal libidio; gets aroused; gets an erection; and gets an orgasm, but no semen spurts out from the erect penis. After the orgasm, he loses the erection.

Anejaculation is a diagnosis which is best made by the patient himself. However, it's often difficult for the patient to explain what's happening to the doctor, hence this creates a lot of confusion. Please go step by step.

Do you have normal sexual desire ?
Do you get a good erection ?
Do you feel an orgasm ?
Do you lose the erection after your orgasm ?

It can be especially difficult for men who have never experienced an orgasm to describe their problem accurately.

It's easy to confuse some conditions with anejaculation. The commonest is called retrograde ejaculation. In this case, the semen goes backwards into the urinary bladder, rather than forward through the erect penis. In this case, the post orgasm urine is cloudy and turbid; and if this is sent to the lab for examination, the doctor will find sperm in the urine.

Men with a very low volume ejaculate ( for example, those with an absent vas deferens) will also have difficulty in making the right diagnosis. Though they do ejaculate semen, the volume is so small that they sometimes feel that they do not have any ejaculate at all !

What causes anejaculation?

Anejaculation may be situational or total.

(a) Situational anejaculation - in this condition the man is able to ejaculate in some situations but not in others. Typically, situational anejaculation is stress-induced and occurs selectively in the infertility clinic or at the time of ovulation or egg pick-up during an IVF (In Vitro Fertilization) cycle. Thus, a man who is able to ejaculate at home may be unable to do so in the clinic because he is self conscious and anxious. Similarly, some men become tense when they know they have to give a semen sample and hence usually fail "on demand” even though they are able to ejaculate on other occasions. Another common type of situational anejaculation when a man can ejaculate during intercourse but is unable to collect a sample by masturbation because he is not accustomed to do so.

(b) Total anejaculation – in this condition the man is never able to ejaculate semen consciously, either during intercourse or by masturbation, at home or in the clinic. Total anejaculation is further divided into anorgasmic anejaculation and orgasmic anejaculation.

Anorgasmic Anejaculation - these men never reach orgasm in the waking state (either by masturbation or by intercourse), and hence do not ejaculate. However, nocturnal emissions are usually present. There is no physical defect. This failure to reach orgasm is sometimes due to psychological inhibitions. Alternatively, some men need a high amount of stimulation before they reach orgasm and do not get this stimulation during intercourse or masturbation.

Orgasmic Anejaculation - these men reach and experience orgasm but they do not ejaculate semen, either because there is failure of emission of semen (due to a block in the tubes or damage to the nerves) or because there is retrograde ejaculation (flow of semen back into the bladder due to weakness of the bladder neck).

How is anejaculation treated ?

Situational anejaculation can often be prevented or treated by simple measures. The semen collection room in an infertility clinic should be in a quiet, discreet location and there should not be a queue of men waiting to use it! If you find the clinic environment is unfavorable discuss it with the doctor and ask if you can bring the semen sample from home (if you stay close by) or from a nearby hotel room.

What to do if you cannot give a semen sample

Sometimes Viagra helps. Viagra by itself does not facilitate ejaculation. However, if you are having difficulty getting an erection, Viagra could help you with that, thus making it easier to masturbate. If you anticipate having difficulty giving a semen sample (based on past experience) on the day of egg pick-up you could request your doctor to collect and freeze your semen beforehand on a day when you are relaxed. In fact, some centres routinely freeze a semen sample from all couples undergoing IVF (In Vitro Fertilization) since unexpected failure to collect semen, due to the stress of IVF (In Vitro Fertilization), is quite common.

If you have difficulty masturbating, but can ejaculate during intercourse, do not be disturbed. Many men are unable to masturbate. Discuss this with your doctor and arrange to collect the semen at home by coitus interruptus. This means having intercourse till the moment when ejaculation is about to happen. Withdraw the penis at that moment and catch the semen in the collection beaker. If that does not work, you can request your doctor for a non-spermicidal non-toxic condom made of silastic. You can buy one from our Online
Store ! This would allow you to have full intercourse and ejaculate into the condom from which the semen is then collected. NOTE: Condoms that are routinely available are coated with a chemical that kills sperm and should not be used for collecting semen.

Finally, some men with situational anejaculation are just not able to collect a sample when required. Discuss this with your doctor beforehand. He will teach you how to use a vibrator to stimulate the penis and collect a sample. A couple of practice sessions should be done before the actual day of collection.

Anorgasmic Anejaculation can be difficult to treat. If there has been a traumatic sexual episode in the past that you are aware of, discuss it with your doctor or ask for a referral to a sexologist or psychologist. If your doctor feels that you are sexually inhibited he may suggest a similar referral.

However, in most cases, counseling is not required. The main treatment for anorgasmic anejaculation is the use of a vibrator. The vibrator acts by providing a strong stimulus, for a long duration, to the penis (use of the vibrator is described below). Due to the stimulation the man reaches an orgasm and ejaculates. Vibrator stimulation results in ejaculation in about 60% of men.

If vibrator therapy fails, electro-ejaculation can be performed. Electro-ejaculation involves the direct electrical stimulation of the nerves to the seminal vesicles and terminal vas. The most commonly used device is the Seager electro-ejaculator which delivers a sine wave, alternating current. The procedure is carried out under general anaesthesia (except in paraplegic men with no sensations). The electrodes are mounted on a cylindrical rod which is lubricated and introduced per rectum with the electrodes facing the prostate gland. The voltage is turned up to 5 volts, held for a second and then turned back to 0 volts. For the next stimulus the voltage is increased to 6 volts. The stimulus is progressively increased till ejaculation occurs. If the antegrade ejaculate is scanty, the bladder is catheterized to check for retrograde ejaculation. Electro-ejaculation will always succeed in men with anorgasmic anejaculation since there is no physical defect. However, electro-ejaculation needs general anesthesia and the semen quality may be inferior. Hence, it is always a second choice to be used only if repeated sessions with the vibrator fail.

Orgasmic Anejaculation Since this condition is due to a physical problem, treatment will depend on the type of problem.

If the nerves are damaged sometimes medicines can help. If medicines do not work, vibrator stimulation or electro-ejaculation will usually be successful in obtaining a sample.

If there is a block due to infection, this can sometimes be cleared by surgery. If surgery fails, or is not possible, then pregnancy can be achieved by aspirating sperm from the epididymis and using these sperm for ICSI (test-tube baby procedure).

Another Malpani Infertility Clinic success story !

We have been married for 6 years now and I had conceived naturally in 2007. Unfortunately I had a miscarriage at 13 weeks and after that for a long time I could not come to terms with my loss. My husband was in a job which kept him away a lot and I was working as well so it helped to bury my nose in work. We lived apart for a year since he was outside the country for a year on work.

In late 2008 we started trying to conceive again but like many things that you try too hard for, it didn't happen for us. We didn't succeed, two transfers later (city movements on account of my husband's work) we found ourselves in Mumbai again in early 2010. I did a lot of research on fertility treatments and during one of those searches chanced upon Malpani's clinic. I booked an appointment and we went to see the good doctor in Jan 2010. He gave us a patient hearing and after scheduling initial tests, we went back to him with results. I was upset since my AMH levels were very low and research told me that my levels didn't look good and I was approaching something called as oopause.

When something like this happens many times you feel demoralised, want more information, yet do not know how to and who to approach for help. Dr Malpani was just what we needed - he talked to us , gave us the highlights and the lowdowns of the treatment and the outcome. My results were bad enough for him to say that my chances were lower than most women at my age who come in for infertility treatment. He asked get a second opinion (which we did and promptly came back to him) and decide if we wanted to go ahead.

For me, its important that I know what's happening and I usually do my own research and reading when I encounter something I'm not familiar with. I did a lot more reading on IVF and infertility. Though our odds were low, we decided to go in for our first cycle. I am quite an optimist and believe in the power of positive thinking and informed decisions. In April, after a work trip to HK, we commenced the treatment at Malpani's clinic. After the initial shots , when I went in for my scan, it didn't look good, I had just seven follicles and my chances of getting mature eggs was low. When we went in for the harvesting, I was pleasantly surprised to find out that all 7 had mature eggs and could be used for the procedure. We got a call from the clinic a few days later and were told all 7 eggs had fertilised. The day we went in for embryo transfer, the embyologist picked the best 4 embryos that could be transferred and all four were transferred.

Then came the dreaded 15 day waiting period which felt like it would never end. Though I wasn't advised bedrest by the good doctors, I took it easy in that time, working from home and avoiding any stress physical or emotional. After 14 days the Beta HCG was a big fat positive and we were over the moon ! We have a 9 month old beautiful baby girl and I want to thank Dr Malpani and his staff for their efficient treatment and care. Post my positive experience I have referred some good friends and relatives to Dr Malpani and I hope their journey is as fruitful as ours was.

Why the government needs to promote Information Therapy

This is a guest post from Mr Rajendra P Gupta. He is an international healthcare expert who sits on several advisory boards in healthcare organizations across the globe. [email protected].

Mr Sharma, an NRI living in the UK, required an operation for a deviated septum. His GP referred him to an ENT specialist at the local NHS hospital, where he could get this done free of cost . The NHS website (www.nhs.uk) provided him with comprehensive information on his condition. If Mr Sharma had done the same surgery in India at a government hospital, it would have been free here as well , but the quality of care delivered and patient satisfaction levels would have been very different . And Information Therapy would be out of the question! How can the Indian government learn from the governments of developed countries and provide effective, quality-focused Information Therapy?

When it comes to healthcare, the government’s role is threefold: financier, provider, and regulator. However, the Indian government’s efforts in these directions are far from satisfactory. Citizens spend for over 78% of total healthcare expenditure from their own pockets, and often get a bad deal in return! It is clear that the government is unable to finance the entire healthcare of the nation. Also, it cannot provide healthcare at all levels (primary, secondary and tertiary care). Even as a regulator, the Indian government has not progressed beyond basic accreditation of facilities to ensure quality healthcare.

With a massive population of 1.2 billion, prevention appears to be the only cure. We cannot afford to build hospitals across India, and even if we did, it would be financially unviable to run and sustain them. So what can be done? If effective prevention has to be implemented, adequate, relevant, and comprehensible information must be provided to citizens.

Starting point of healthcare: Healthcare begins with awareness. In the absence of awareness, the healthcare system tends to be abused by providers and overused by patients! It is imperative that the government creates empowered patients, and the best way to do that is by providing information to citizens about their health and healthcare. The government must act as a catalyst and promote information dissemination about health and illness in simple, local language. Thanks to technological advances, there are now many ways through which the government can reach out to the common man. These are not only cost effective, but also act as a visible indicator of the government’s interest in the health of its citizens. The funding for such activities can come through private-public partnerships.

Toll-free health help lines: The government should set up toll-free help lines to answer citizen’s medical queries. These could be partly automated, using IVR, and run by call centers staffed with pharmacists, nurses and doctors. India has approximately 800 million mobile phones, and it is believed that 70 percent Indians have access to mobile phones - directly or indirectly. Callers could be mapped from the location of the call, and guided to the nearest available facility should more tests or treatment be required. The option to remain anonymous must be available, should the caller so desire.

The government could mandate healthcare as a VAS (Value Added Service) for all cellular service providers. It is high time that the Ministry of Health develops information that is specific to diseases like obesity, diabetes, hypertension, and the like, and make it available for free download on all cell phones for its citizens. Another option is setting up a web-based SMS alerts service, to which people are able to subscribe free of cost.

Pharmacies: Over 700,000 (seven hundred thousand) pharmacies exist across the country. Pharmacies are used as the first point of contact for a majority of healthcare problems by most Indians. Apart from being easily accessible, pharmacists are happy to provide solutions to common ailments, and visiting a pharmacy for minor health issues is also cheaper than going to a doctor. This national network of pharmacies could be effectively used to provide Information Therapy to every Indian! Pharmaceutical companies can also be encouraged to install ‘point of care’ healthcare information kiosks at pharmacies. The pharmaceutical company can use this to advertise their products, and patients would benefit as they would have easy access to reliable information. Hopefully, these kiosks will become as popular as ATMs!

Incorporating health in the school curriculum: It is time to separately attend to both the urgent health challenges (to manage chronic diseases) and the important challenges (to address child health). By teaching children about their health, we can ensure that they are knowledgeable about basic issues related to good health and symptoms of sickness.

Online health Library: The government must buy copyrights of a few leading healthcare books and articles and make them available for free download at the Online National Health Library. We need to learn from the initiatives which the UK (http://www.nhs.uk) and the US governments ( www.medlineplus.gov) have taken!

UID Smartcards for Healthcare: The UID smartcard initiative by the Indian government also represents a huge opportunity. It is possible to store basic demographic data on these smart cards, and link it to EHRs (electronic health records), thus allowing us to deliver customized Information Therapy in regional languages.

In this digital age, where Information Technology drives down cost and increases speed and reach, the government must set the right priorities for encouraging awareness and education for healthcare. Information Therapy is a logical step in this direction. It is high time that every Indian receives quality healthcare, and the government must ensure that no stone is left unturned to achieve this ambitious, but not impossible, goal. Better governance in terms of providing quality public healthcare will result in healthy citizens who are more productive, and a prosperous , happier country.

HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.
The website is at http://www.patientpower.in/

This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.

Using the GRIEV_ING mnemonic when someone dies

It can be hard for doctors to give bad news , especially when a patient dies. Using the GRIEV_ING mnemonic can help you do a better job !

Gather: Ensure that all family or survivors are present. Offer to call others or wait for them.

Resources: Call for support resources that are available, such as friends and ministers. Start this process while still in the resuscitation room.

Identify: Identify yourself. "I am Dr. Hobgood, the one taking care of your mother."

Identify the deceased or injured patient by name. Identify the family's understanding of the day's events. Identify that you are bringing bad news. "Fire the warning shot: 'Things were not going well.' You have to [prepare them for] the fact that the news is bad."

Educate: Briefly educate the family about the events that have occurred in the emergency department.

Educate them about the current state of their loved one. "Fire another warning shot if needed."

Verify: Verify that their family member has died. Be clear! "You cannot use euphemisms. You have to say 'dead' or 'died.' "

(Space _): Give the survivors personal space. Stop talking. Allow them to absorb the information.

"You can touch them if you feel comfortable doing this. You can give them permission to cry by handing them a box of [tissues]," she said.

Hugging is okay, if you feel all right doing so. "Sometimes those hugs are the most consoling part of this whole thing," Dr. Hobgood added.

Inquire: Ask if there are any questions. Answer them all. Take the time--this sends an important message.

Nuts and bolts: Ask about organ donation, funeral services, and personal belongings. Offer the family the opportunity to view the body. "There is often a great deal of comfort in viewing the body." Tell them that the room is a mess, that the patient doesn't look like they might expect to facilitate this viewing; but "giving them the choice is very important," said Dr. Hobgood.

Give: Give them your card and access information. Offer to answer any questions that may arise later.

"Tell them 'I am here for you. You are going to have questions.' This speaks volumes," she said.

"I have been doing this for 5 years, and only five people have called me, all to say, 'Thank you.' Always return their calls.

Information Therapy for Doctors

You’re a doctor from one of the best medical schools in the country. You aced your class, and know medical terms like the back of your hand. One day, a patient comes in with an ailment, and while you think you know everything about the problem, his detailed, extraordinary questions stump you! He’s not the regular, accept-whatever-the-doctor-says sort of patient. He’s well-informed and has done extensive research on his illness. You could refer him to a specialist, but how will that enhance your own medical knowledge?

Doctors need Information Therapy too! A doctor’s major asset is his professional knowledgebase. As medical science progresses, doctors need to keep up with current trends. Medical textbooks get outdated quickly – and new editions and medical journals can be very expensive! Unfortunately, most doctors today are dependent on their “friendly” medical representatives for information on all the latest advances in therapeutics, and these reps are not always the most reliable source of information. This is why the Medical Council of India (MCI) has made Continuing Medical Education (CME) compulsory for doctors. The motive behind this move is to enable doctors to invest in educating themselves, so that they remain abreast with the latest, medical advances. When equipped with this knowledge, doctors will be in a better position to provide state-of-the-art medical care to their patients.

The only form of CME credits which the MCI recognizes is attendance at a medical conference. This medical conference has to be approved by the Council (presumably based on the quality of the content provided); and doctors who attend approved conferences get a certain number of credits for their attendance. Doctors need to prove that they have accumulated a certain number of credits every year if they want to renew their registration. The biggest problem is that in real life, medical conferences are terrible tools for teaching doctors! Lectures are the most inefficient form of transferring information!

Have you ever attended a medical conference? If you ever do, you are likely to find half the audience outside in the hallway – chatting, collecting freebies at the stall, and eating. Most are fast asleep once the lights are dimmed, while other doctors go out shopping or sightseeing once lunch is over. Few speakers have the eloquence and presentation skills to grip their audience since most are selected based on a quid pro quo basis – ‘If you invite me as a speaker for your conference, I'll invite you for mine.’ This is why most conferences have the same speakers talking on the same topics. Most presentations are boring and poorly prepared. They often contain outdated information, prepared at the last minute by a junior resident doctor, who has lifted information straight from the internet. The speaker then reads out the text on the slides, and tries to show off his erudition. The only reason doctors can get away with this is because few doctors in the audience are listening - and most doctors know even less than what the speaker does! This is why the ‘learning’ that doctors derive from conferences evaporates so quickly!

The reality is that these conferences are an utter waste of time and money! Can we really afford to waste the doctor's precious time on such insipid conferences that offer no real value or enhance the doctor’s knowledge? We need better tools to ensure that doctors remain up-to-date. If a doctor’s knowledge becomes outdated, he or she ends up losing patients to well-equipped specialists in corporate hospitals. Being poorly informed can also be embarrassing for doctors, when their patients with internet printouts know more about their disease than they do! The biggest problem arising from such ignorance is lawsuits for medical negligence – a doctor’s worst nightmare. This is why when doctors are stumped by difficult patients, they refer them to a specialist or expert, who then helps them to learn more about the management of that particular problem. However, this kind of learning is very episodic and opportunistic, and not all consultants are good at educating family physicians!

Doctors do not choose to remain willfully ignorant about medical advances. The reality is that, in a busy practice, when doctors spend all their time taking care of their patients, it is very hard to keep up. The trick is to deliver Information Therapy to the doctor ‘just in time’ – exactly at the time he needs it. This means the best way of providing it is when he is actually seeing a patient with a perplexing clinic problem. Today, the vast majority of doctors have easy access to the internet – either through a PC, laptop or their smartphone. This is why many will turn to the internet to keep themselves updated. While there are many online free resources, such as Medscape (www.medscape.com), Medicine Net (www.medicinenet.com), Doc Guide (www.docguide.com) and WebMD (www.webmd.com) the sad truth is there is very little high quality free medical information available on the net! Much of it is patchy and unreliable.
The good news is that now, for less than Rs 30 per day, Indian doctors can subscribe to the world’s largest online medical library, at www.mdconsult.com! MDConsult provides doctors with instant online access to the full text of over 40 respected medical books and 50 prestigious medical journals that are constantly updated, eliminating the need to ever buy a medical book! MDConsult provides convenience and peace of mind – at the doctor’s desktop – for only Rs 9,995 per year! This is a highly discounted price for Indian doctors only. MDConsult is the world’s largest online medical library. You can take a free tour at www.thebestmedicalcare.com/mdconsult.

It must be emphasized that Information Therapy for doctors does not just comprise learning from medical books and journals. The scope of Information Therapy goes much beyond that. It is equally important for physicians to learn to see things from a patient’s perspective! Doctors sometimes take patients for granted, not realizing that conversing with a patient can open new doors of knowledge, and lead to more effective diagnosis.

HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.
The website is at http://www.patientpower.in/

This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.

Information Therapy to help poor countries tackle chronic diseases

The Economist has an article on Chronic diseases in developing countries.
" The World Health Organisation expects deaths from non-communicable diseases to rise by 15% between 2010 and 2020, with jumps of over 20% in Africa and South-East Asia. The number of Chinese diabetics is expected to double by 2025. Even in sub-Saharan Africa, chronic illnesses are likely to surpass maternal, child and infectious diseases as the biggest killer by 2030. Most of them stem from sugar, fat, smoke and sedentary lifestyles."

Since these are chronic long-term illnesses, many of which have a strong lifestyle component and are therefore preventable, Information Therapy is the most cost effective long term solution to deal with these !

How IVF patients set themselves up for failure

One would expect that every patient will do whatever it takes in order to maximize the chances of success because so much riding on the outcome of the IVF cycle. However, we often find that patients will do stuff which will reduce their chances of getting pregnant .

One common problem is that they rarely do enough homework about the IVF treatment, and unless they pay attention to the nitty-gritty , I feel patients actually end up compromising their chances of success.

Another common problem is that they start with very unrealistic expectations. What this means is that because you're all set to succeed ( because they are pumping themselves to remain optimistic and gear up for a positive result ) if and when the cycle fails , they go to pieces as they just can't cope with the emotional roller coaster ride. Many refuse to try another IVF cycle, even though another IVF cycle represents their best shot at having a baby. They waste so much time feeling sorry for themselves, that they drain their emotional reserves, and fritter away valuable time – and their best chance of having a baby.

Patients need to reframe their perspective . They need to understand that having a baby is a process which can sometimes take time , and they have to be willing to devote that time and energy in order to reach this deeply desired goal, rather than try to put all their eggs ( pun intended !) in one basket.

Lost in the health information maze?

Mrs Chopra, 45, was recently diagnosed with diabetes. Her doctor followed the standard protocol, prescribing her medicines, and advising her on diet and exercise. She was not content with the advice though. This was something that was affecting HER body, and she wanted to dig deeper for answers. She wanted to know how she could better take care of herself, and while she respected her doctor’s advice, she wanted more information that would set her confused mind to rest. She did what most patients in India and around the world would do - log on to the world wide web. A casual search for ‘Diabetes’ returned 268,000,000 results, with the first as always being Wikipedia, a helpful but often inaccurate portal. Mrs Chopra did not receive accurate, definitive information on her ailment, with different websites suggesting different measures to control diabetes. Frustrated, she simply stuck to her doctor’s advice. Whether she could have done more for herself, she would never know.

Fifty years ago, the major problem was that patients had insufficient information. All the knowledge was locked up in medical books and journals, and this information asymmetry forced patients to put their doctors on a pedestal. Patients felt helpless, and they were unable to question their doctors due to their limited knowledge on medical matters. Today, there has been a sea change, but ironically, patients are still helpless! This is because they have access to too much information, a major chunk of which is wrong, inaccurate or outdated. Thanks to Google, patients can effortlessly unearth thousands of pages of information on any topic, but this information is poorly organised and is not put in context, which means that patients often find themselves at sea while surfing the web to find specific answers to their queries.

Why is too much information as dangerous as too little? This is because there is a marked difference between data, information, knowledge and wisdom! Moreover, there is no effective quality control when it comes to the internet which further aggravates the problem. It is common to find two different websites suggesting diametrically opposite things. This frustrates and confuses patients, and they wonder who to trust and why.

How can patients judge whether the information is reliable or not? There have been numerous initiatives to assist them in evaluating the quality of information but, unfortunately, most patients are not equipped with sufficient knowledge to be able to differentiate between ‘good’ information and ‘bad’ information. The sad truth is that many commercial websites can be well-designed and attractive, but under that garb, the information they provide is completely false. Their primary agenda is to sell you something, and not to educate you, which means it is easy to be misled.

This is where Information Therapy comes in! Information Therapy is the prescription of the right information, to the right person, at the right time to help make a better health decision. Information Therapy will both revolutionize the role of information in healthcare and enable patient-centered care.

Who better to provide Information Therapy other than the government? After all, a major role of the government is to look after the health of its citizens! While the UK and USA governments appear to be on track, the Indian government lags behind in providing this key service to its citizens. The NHS in the UK (www.nhs.uk) provides a comprehensive database for patients, assisting them in helping themselves. There are also links that inform you of the nearest hospitals, pharmacies, GPs, rehabilitation centres and the like. In the USA too, the FDA website (www.fda.gov) does a splendid job of informing and educating patients about recent developments in healthcare. Moreover, patients in these countries are well aware of their rights, enabling them to make informed choices and adopt a no-nonsense approach to healthcare. In India, such an approach is seriously lacking, and patients are generally left to fend for themselves, relying on information on the web that could take them down the wrong path.

Patients need reliable information - a trusted guide who takes them through the healthcare information maze. Ideally, one’s personal doctor should assume this role, but sadly, most doctors cannot afford to spend so much time. So where can patients turn for help? Librarians are information specialists, and can help in separating the wheat from the chaff. After all, they have no commercial interest in selling patients anything. The Medical Library Association of USA (www.mlanet.org) has taken phenomenal strides in this direction. It comprises 1,100 institutions and 3,600 individual members in the field of health sciences, all working to ensure that the best healthcare information is available to all.

There are also initiatives that provide quality seals to ensure that the information being provided to patients is reliable and of topnotch quality. An example of this is the Health on the Net Foundation (www.hon.ch). Health insurance companies in the USA such as United Healthcare (http://www.uhc.com/health_and_wellness.htm and
Aetna ( http://www.besmartaboutyourhealth.com ) have invested a lot of time and energy in educating their patients, and it makes business sense for them to produce high quality information for their clients, as prevention is far better than cure. However, Indian companies are still lagging behind and have a long way to go before they can catch up!

To fill this gap in India, HELP, a non-profit organization which runs the world’s largest free patient education resource center has partnered with Healthwise to use the latest technology to empower patients. The sole mission of the Healthwise Knowledgebase is to empower patients with Information Therapy! Healthwise helps patients make better healthcare decisions by:

1. Promoting self care and helping them to do as much for themselves as possible.
2. Providing them with evidence-based guidelines, so that they can ask for the right medical treatment that they need – no more and no less.
3. Equipping them with veto power, so they can say ‘No’ to medical care when they don’t need it, thus preventing overtesting and unnecessary surgery.

The Healthwise Knowledgebase (www.informationtherapy.in) is a free database that acts as a virtual guide, enlightening patients on their ailments, so they can take the right path to healthcare. Patients can also log on to the Health Education Library for People website (www.healthlibrary.com) where they can ask any question about a particular ailment.

What of the future? With advances in telemedicine and internet penetration and speed, it’s possible that the web will allow patients to access an online virtual doctor with impeccable bedside manners, who can guide and reassure patients, enabling them to take informed choices about their health!

HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.
The website is at http://www.patientpower.in/

This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.

Infertile couples often feel very sorry for themselves

They feel that life is very unfair and that they are being deprived of one of the greatest pleasures which a couple can have - having a baby. They are often lose faith in God because they feel they're being punished for no fault of theirs. They often envy other couples who have kids; and their heart breaks when they see starving beggar children , who are forced to fend for themselves.

One of the commonest refrains is - why me ?

This is one of those deep philosophical questions for which we have no answer. However, rather than wallow in self-pity ( which just makes a bad situation worse ) , it's better for them to reframe their perspective. One of life’s secrets is that the best way to help yourself is to help others. Infertile couples sometimes forget how fortunate they are-and the very fact that you are reading this means you are amongst the top five percent of the global population because you have access to a computer and are literate.

There's a lot you can do to help others , so don't underestimate your capabilities. You can choose to volunteer and help the underprivileged. When you see some of the miserable conditions under which so many people subsist in today's world firsthand, hopefully you'll remember to be grateful for what you do have , instead of focusing on what you don't , which just leads to unhappiness.

Please learn to give appreciation and gratitude for what you have. Being infertile can be hard , but it's something which can teach you a lot of life-lessons. Infertility will help you to mature very quickly as an adult, and become more empathetic because you're experiencing some pain , grief and suffering yourself. What you choose to learn from this experience is completely up to you-never forget that !

When patients complain – a guide for doctors by Dr Malpani

It’s no fun when patients are unhappy and have complaints. No one likes dealing with patient complaints , which is why they are often ignored . Even worse, many patients with complaints are belittled or patronised, as a result of which a festering problem just becomes worse.
It’s best to treat every complaint as a gift ! Remember that the fact that the patient has taken the time and trouble to complain means that the patient is not planning to desert you and walk off to the doctor next door !

Complaints are the best opportunity doctors have to understand the patient’s experience , so that they can help to improve it.

1. You can help to resolve the patient’s complaint, first by making sure the patient feels heard, and second by addressing the problem so it does not recur.
2. You can gain insight into your practice , as seen through the patient’s eyes. This will help you become more empathetic.
3. You act as a role model to your staff . Once they see how seriously you treat patient complaints , they will also treat them with equal respect !
4. If you address the problem and satisfy the patient , you can create a “raving fan” for your practice, who will be happy to recommend you to his friends and family.

Using IT to facilitate Information Therapy

This is a guest post by Nrip Nihalani and Aditya Patkar of Plus91 in which I am an angel investor.

Our society still hasn’t yet evolved enough to give HIV patients the dignity they deserve. So when Mr Aggarwal was diagnosed with this disease, he felt lonely, depressed, and shunned by society. His doctor suggested that he join an online community where other HIV patients were sailing in the same boat. Days after ‘going online’, Mr Aggarwal is a changed man, thanks to all the healthy group discussions and success stories of treatment. He has come to terms with his illness, feels positive about treatment, and most importantly, knows that he is not alone.
Information about the patient is the lifeblood of medicine. Modern technology has enabled new ways in which we store and share this information for many to use, reuse, improve and share some more.

In this day and age of the Internet, mobile phones and social media, patients are empowered with the possibility of real-time communication, 24/7 access to information, and live community feedback. Today’s patients have been exposed to numerous avenues besides the ones which our forefathers were aware of. Such exposure has empowered this generation of patients to ask for better care, better facilities, cheaper alternatives, and more useful ways of using technology to provide healthcare as well as healthcare information. However, in spite of large amounts of information being available today, a big problem that exists is that the information is not necessarily usable when and where it is most needed.

To effectively facilitate Information Therapy, Information Technology must bring about a marriage of ideas with utility; IT has to ensure that all the players of this ecosystem come together to improve information management for the benefit of the patient, healthcare professionals, and decision-makers throughout the healthcare sector. Only then can Information Therapy be provided to various participants of the healthcare ecosystem through the different stages of an illness:
• Diagnosis and information gathering
• Finding a provider
• Soliciting a second opinion
• Accepting a diagnosis
• Participation in research
• Being a patient advocate

For technology to be truly successful, there should be sustained focus on the different avenues of Information Therapy.

We explore 5 avenues with roadmaps below:

Avenue 1: Medical information sources

IT vendors must work at creating patient-friendly reliable trustworthy healthcare and medical information databases. These can be about medicines, diagnostics, decision trees, side effects, precautions, etc. A great example of this is the Healthwise Knowledgebase at http://healthwise.healthlibrary.com.

Technology should evolve to allow for more effective ways for updating information in such knowledge bases and wikis are a good model. These could be based on curation, criticism and collaboration to ensure that it is self-adjusting, effective and patient-centered. Advances in social technology will provide new ways for spreading this information, and innovation in delivery mechanisms will facilitate easier ways for people to consume this information.
This will help in:
• Creating informed patients
• Creating valued sources
• Ensuring poor sources are filtered and discarded

Avenue 2: Digital Identities for healthcare providers and provider information sources

The logical first step in creating rich databanks of provider information is to create identities for providers in the electronic world. The simplest way to do this is to create websites for doctors, clinics, and hospitals. This may not necessarily be individual websites for those who don’t want to invest in one, but simpler, informative, single web pages that fulfill the purpose of creating an identity for them.

Such websites can be optimized to convey services, location and contact information, medical notes, special cases treated, and the like. Such optimization will help in disseminating useful provider information to people looking for the same. This isn’t advertising, it’s a service: people today face many choices and are hampered by lack of information. Improving their ability to find information quickly is beneficial to them.

Technology vendors must provide easier ways for provider information to be located and searched, and this should be available through different types of media. They must:
• Create searchable directories of doctors and hospitals and other healthcare providers.
• The directories should allow users to grade and provide feedback about the healthcare providers they have interacted with, in a controlled environment.

Avenue 3: Patient-doctor communication

True engagement comes about through two-way, mutually-beneficial conversations. Technology must create multiple ways to facilitate both formal and informal patient-provider communication. The telephone made a huge impact on the way we communicate, and so did email. Newer technologies must be used to offer ease of use, larger acceptance and lower costs. Many providers today communicate with their patients using Skype, Google chat and even Facebook. Technology must build on such success stories while also allowing patients to protect their privacy and confidentiality.

Avenue 4: Health Information Exchanges

Technology vendors must work together to create Health Information Exchanges (HIEs) based on interlinking of electronic medical records, electronic health records, laboratory data and patient health records across providers and patients. This helps in:
• Providing patients with the option to switch doctors easily
• Allowing doctors to easily refer patients to other doctors for a second opinion
• Enabling direct access to laboratory data for physicians

The creation of a huge databank of medical data including symptoms, diagnostics and prescriptions (in which the data is ‘anonymised’ to protect patient privacy) can help to improve the cost-effective delivery of effective medical care and promote evidence-based medicine. HIEs must be designed to allow innovators to be able to create novel ways of using and sharing the vast volume of data within HIEs as long as patient and provider confidentiality is not compromised.

A major roadblock in Health Exchanges is that data is stored by various knowledge bases, EMR and EHR vendors and portals in their own formats. Devices also use divergent technology to record and store information. But as with Imaging and the DICOM compatibility norms, new standards such as HL7 and CCR are breaking down barriers for exchange of data in healthcare information, to allow data to flow smoothly.

Avenue 5: Online health communities

For years, patients have liked to work in groups, to support each other, to help themselves cope with illnesses which their near and dear ones don’t understand, and to seek advice from others who have similar ailments. Bringing people together in collaborative dialogue to explore social conditions that are the major influences of health and illness generates deeper collective awareness and community-driven action. Since individuals don’t see their lives partitioned into online and offline worlds, online communities should be given as much value as offline ones. A variety of online communities must come up for connecting patients quickly and privately with others who share similar health experiences.

Technology for creating online communities allows just about anyone to set up an online community, replete with video and audio chats, whiteboarding, discussion forums and bulletin boards. This enables the creation of an integrated digital ecosystem which simultaneously addresses both individual and social dimensions of health. It also allows patients to engage with each other and involves providers too.

Case Studies showcasing IT providing effective Information Therapy using the avenues discussed above:

• A hospital website provides emergency response numbers which earlier would only be found in a phone book. This improves the delivery of emergency medicine by providing real-time information through e-health channels.
• A gynecologist’s website allows a patient to calculate her schedule for check-ups and ultrasound visits and set reminders for the same. Earlier, she would have to get it written down by the doctor; now all she needs to do is log on to her trusted doctor’s website and check the dates herself. E-Health helps people plan their long term healthcare through tools that promote and help them to understand what they need to do.
• Cancer patients after chemotherapy sessions feel low and unhappy, and are tired of the emotional stress involved. They never talk to anyone and shy away from contact. When they are online, they have a new lease of life, being able to interact and get support from other patients. Moreover, they can do this anonymously! Learning simple remedies and tried and tested tricks from expert patients who know and feel what they are going through because they have ‘been there, done that’. The power of e-health through online patient forums and support groups allows information to flow freely – and since this is digital, it’s much more easily available and accessible.
• A patient in a remote village in South India suffering from acute pain in the abdomen has to make do with the local village doctor’s prescription. A year later, a telemedicine pilot allows this same patient to get a second opinion using a remote video link. He is able to identify what’s happening to him via the printouts he gets from the telemedicine center; and realizes that he must work at improving his diet if he wants to prevent his acid reflux.

Both the ITs – Information Therapy and Information Technology – must work synergistically to create a wonderful future for healthcare – one that is modern and simplifies the life of patients and doctors.

HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.
The website is at http://www.patientpower.in/

This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.

Making sense of the hCG blood test

The HCG blood test is one of the easiest medical tests to interpret . This is because it is a very special molecule, which is produced only by the placenta during pregnancy , for all practical purposes . ( Very rarely , it can be produced by certain tumors , but these are so uncommon that we can safely ignore them). What this means is that the presence of hCG in the blood ( or in the urine ) means that the patient is pregnant . Of course , it doesn't tell us anything about the health of the pregnancy , or its location.

The major problem with interpreting the hCG result is that most people think negative means zero . They conclude that if the level is 7, this means that it is positive and they are pregnant. Unfortunately, this is not true , and a negative hCG is any level of less than 10 mIU/ml. This means that if the level is less than 10 mIU/ml, we can conclude that the patient is not pregnant .

However, a lot of women get confused by their results ( and sometimes doctors and the labs as well) add to this confusion by saying – Hey, look, your level is 11 , which means it’s a positive result and you are pregnant ! If you are confused, remember that hCG levels should not be seen in isolation . While one figure does give valuable information , serial HCG levels are far more useful, because the levels will keep on rising and doubling every 48 to 72 hours in a healthy pregnancy.

How Indian Doctors Loot Patients.

There's this email which is doing the rounds in India today.

" It is by Dr. B M Hegde.

1) 40-60% kickbacks for lab tests. When a doctor (whether family doctor / general physician, consultant or surgeon) prescribes tests - pathology, radiology, X-rays, MRIs etc. - the laboratory conducting those tests gives commissions. In South and Central Mumbai -- 40%. In the suburbs north of Bandra -- a whopping 60 per cent! He probably earns a lot more in this way than
the consulting fees that you pay.

2) 30-40% for referring to consultants, specialists & surgeons. When your friendly GP refers you to a specialist or surgeon, he gets 30-40%.

3) 30-40% of total hospital charges. If the GP or consultant recommends hospitalization, he will receive kickback from the private nursing home as a percentage of all charges including ICU, bed, nursing care, surgery.

4) Sink tests. Some tests prescribed by doctors are not needed. They are there to inflate bills and commissions. The pathology lab understands what is unnecessary. These are called "sink tests"; blood, urine, stool samples collected will be thrown.

5) Admitting the patient to "keep him under observation". People go to cardiologists feeling unwell and anxious. Most of them aren't really having a heart attack, and cardiologists and family doctors are well aware of this. They admit such safe patients, put them on a saline drip with mild sedation, and send them home after 3-4 days after charging them a fat amount for ICU, bed charges, visiting doctors fees.

6) ICU minus intensive care. Nursing homes all over the suburbs are run by doctor couples or as one-man-shows. In such places, nurses and ward boys are 10th class drop-outs in ill-fitting uniforms and bare feet. These "nurses" sit at the reception counter, give injections and saline drips, perform ECGs, apply dressings and change bandages, and assist in the operation theatre. At night, they even sit outside the Intensive Care Units; there is no resident doctor. In case of a crisis, the doctor -- who usually lives in the same building -- will turn up after 20 minutes, after this nurse calls him. Such ICUs admit safe patients to fill up beds. Genuine patients who require emergency care are sent elsewhere to hospitals having a Resident Medical Officer (RMO) round-the-clock.

7) Unnecessary caesarean surgeries and hysterectomies. Many surgical procedures are done to keep the cash register ringing. Caesarean deliveries and hysterectomy (removal of uterus) are high on the list. While the woman with labour -pains is screaming and panicking, the obstetrician who gently suggests that caesarean is best seems like an angel sent by God! Menopausal women experience bodily changes that make them nervous and gullible. They can be frightened by words like " and "fibroids" that are in almost every normal woman's radiology reports. When a gynaecologist gently suggests womb removal "as a precaution", most women and their husbands agree without a second's
thought.

8) Cosmetic surgery advertized through newspapers. Liposuction and plastic surgery are not minor procedures. Some are life-threateningly major. But advertisements make them appear as easy as facials and waxing. The Indian medical council has strict rules against such misrepresentation. But nobody is interested in taking action.

9) Indirect kickbacks from doctors to prestigious hospitals. To be on the panel of a prestigious hospital, there is give-and-take involved. The hospital expects the doctor to refer many patients for hospital admission. If he fails to send a certain number of patients, he is quietly dumped. And so he likes to admit patients even when there is no need.

10) "Emergency surgery" on dead body. If a surgeon hurriedly wheels your patient from the Intensive Care Unit to the operation theatre, refuses to let you go inside and see him, and wants your signature on the consent form for "an emergency operation to save his life", it is likely that your patient is already dead. The "emergency operation" is for inflating the bill; if you agree for it, the surgeon will come out 15 minutes later and report that your patient died on the operation table. And then, when you take delivery of the dead body, you will pay OT charges, anaesthesiologist's charges, blah-blah-

Doctors are humans too. You can't trust them blindly. Please understand the difference.

Young surgeons and old ones. The young ones who are setting up nursing home etc. have heavy loans to settle. To pay back the loan, they have to perform as many operations as possible. Also, to build a reputation, they have to perform a large number of operations and develop their skills. So, at first, every case seems fit for cutting. But with age, experience and prosperity, many surgeons lose their taste for cutting, and stop recommending operations.

Physicians and surgeons. To a man with a hammer, every problem looks like a nail. Surgeons like to solve medical problems by cutting, just as physicians first seek solutions with drugs. So, if you take your medical problem to a surgeon first, the chances are that you will unnecessarily end up on the operation table. Instead, please go to an ordinary GP first


Prof. B. M. Hegde,
MD, FRCP, FRCPE, FRCPG, FRCPI, FACC, FAMS.
Padma Bhushan Awardee 2010 "

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Here are my comments.

Sadly, there is a grain of truth in this, but fortunately, most doctors are NOT like this !

This kind of doctor-bashing just makes a bad situation worse, in my opinion, because it destroys the trust between doctor and patient.

We need to provide constructive win-win solutions !

Information Therapy – the right information at the right time for the right person – can be powerful medicine ! Ideally, every clinic , hospital, pharmacy and diagnostic center should have a patient education resource center, where people can find information on their health problem .

If patients are well-informed, they'll be able to differentiate between good doctors and bad doctors much more effectively !

HELP will be organizing its 2nd Annual Conference on Putting Patients First. The theme this time is : Using Information Therapy to Put Patients First in India.
The website is at http://www.patientpower.in/

This will be held at Nehru Centre on Sunday, 9th October’11 . Mr.Ken Long , Vice President, International Operations at Healthwise, U.S.A, will be the keynote speaker and he will be talking on “What Healthwise is doing in the US to Promote Information Therapy – what we’ve learned so far”.

On this occasion, we will be releasing a book titled, Using Information Therapy to Put Patients First.

If you are worried about the quality of medical care your doctor provides you, and want to know what you can do about this, please do accept this invitation – I promise you it will be worthwhile !

What doctors can learn from dentists

Dentists have traditionally been considered to be poor cousins to doctors. It was usually students who could not get into medical college but who wanted to be called Doctor and practice the healing arts who took admission into dental colleges. However, times have changed , and I think it's time doctors learned from dentists.

Dentists organize their practice far more efficiently than doctors do. They have a much better reputation for running on time; keeping better medical records; and making sure patients are sent regular reminders to keep their teeth in good shape. There is also much better delegation of duties within the dental office , so that you have a dental hygienist who teaches you how to take care of your teeth, while the dentist can focus on fixing the problems you may have. Their billing systems are also much more efficient and effective, and rarely do they have problems with collecting their professional fees. Not only do many more dentists have websites, many more of them use technology ( such as EMRs) far more efficiently.

I think the reason for this is that dentists have always been used to a fee-for-service system . They understand the importance of customer service in order to attract new patients and keep their existing patients happy.

Just like doctors can learn from dentists, they can learn from chiropractic practitioners and osteopathic physicians as well. These professionals usually have a much better style of communicating with their patients and engaging them in the treatment. Rather than take a holier than thou attitude and look down upon these sister professionals, I think doctors need to think about what we can learn from them !

How I prescribe Information Therapy in my practice

My patients, Mr and Mrs Gupta, are sitting in the waiting lounge of my clinic, awaiting their turn. The usual gamut of magazines is in front of them. But do these serve any purpose? Instead, my receptionist gives them a comic book about IVF, so they can learn more about their treatment options. This puts them in a better frame of mind, and many of their doubts get resolved even before they come in. The beauty of Information Therapy is that it can be used in many innovative ways !

I am an IVF doctor and I put my heart and soul into treating my patients. IVF is often the last resort for infertile couples, and, understandably, these couples will have countless questions about IVF. This is an expensive treatment, and they are investing immense time, hope and energy in building their family. Since the outcome of IVF is always uncertain, they have a lot of doubts and misgivings. These are still many myths and misconceptions surrounding IVF, and many women are worried that IVF babies are ‘weak’; or that all IVF pregnancies are multiples; or that the hormonal injections taken for IVF will make them fat or cause them to develop ovarian cancer in the future. Moreover, infertility often impacts the entire family (and not just the couple), and many decisions about medical treatment are made in consultation with all the many family members.

I proactively use Information Therapy to clear doubts and answer questions. This helps ensure that everyone is on the same page. Since I provide this information, patients are reassured that I am open and transparent. They know they are in safe hands, because they can see that I am well informed and knowledgeable. The fact that I am an expert in my field makes them put their faith in me.

Information Therapy needs to be embedded in clinical workflow, and we start providing Information Therapy well before the patients come to us for a consultation. We do this online, using many channels, including our website ( www.drmalpani.com) ; videos on youtube (http://www.youtube.com/user/aniruddhamalpani) ; and social media, including twitter (http://twitter.com/#!/drmalpani) and facebook
( www.facebook.com/Dr.Malpani) .

Web-based information prescriptions have major advantages:
(1) I can update the information quickly and easily.
(2) The information is accessible to all my patients around the world. Using Google translate, patients can read it many different languages!
(3) The information can be presented in an interactive and engaging manner through the use of animation and videos ( www.ivfindia.com) .
(4) Delivering the information does not cost me anything.
(5) Patients can absorb and review the information at their own pace – and for free!

Isn’t all this expensive? Who has the time to do all this? Yes, it is expensive and time-consuming, but the beauty is that once you have done it, you can use it many times, for many patients, and over many years! ‘Create once, use multiple times’ is a very cost effective proposition. Updating and maintaining content is much easier once you are familiar with the process.

Even better, you can get your patients to contribute to your online resources. For example, we have a section called Success Stories (http://www.drmalpani.com/ivfsuccessstories.htm). We request our patients to write about their infertility story and their experiences at Malpani Infertility Clinic and then upload this to our website. This first person account helps other infertile couples when they are making decisions regarding their treatment, as they are getting information from someone who has been there, done that! We also encourage our patients to act as email buddies, to help other infertile couples in distress. I always remind my patients that helping others is a great way of helping yourself.

The Internet has become an important source of health and medical information. However, a significant amount of health-related information on the Web is inaccurate, unreliable or untrustworthy. By creating our own content, we can direct patients to information that is of high quality, appropriate to their condition, and consistent with our approach to treatment. This helps them to save time and stops them from getting confused or misled. Patients still depend on doctors to provide the most credible answers to their health questions!

In addition to providing Information Therapy online, we also provide it in the real world. When patients come to the clinic for a consultation, we give them with an IVF comic book while they are waiting for an appointment. Thanks to such Information Therapy, my consultations have become much easier. I do not have to waste time going over the basics and can focus quickly on the patient’s key concerns. The fact that I am an author reinforces their confidence in my professional competence and helps to reassure them that they are in safe hands. Doctor shopping is a fact of life in today’s world, and since we provide this information proactively, our patients prefer coming to us, because they can see that we are open and transparent.

All our educational materials help to ensure that patients have realistic expectations of their treatment. While it is true that our success rates are excellent, it is also a fact that the outcome of any IVF cycle is always uncertain, and patients need to be prepared for failure. Reading about this in black and white helps them to understand the limitations of our technology.

Patients often forget a great deal of what is told to them. This is why we give them a DVD to take home, which they can review at leisure – often with other family members. This helps to reinforce my message, and it also ensures that we stand out amongst the other IVF doctors that they have visited. During and after the IVF treatment, we encourage patients to remain in touch by email. I find this a very efficient way of answering questions. This way we don’t have to play telephone tag – and since everything is in writing, patients don’t get confused or forget things! We also have a FAQs page on our website, while helps us to proactively reassure patients and put their doubts to rest.

We know that different patients have different learning styles, which is why we use myriad tools to deliver Information Therapy. On our site at www.ivfindia.com, we have developed a wide variety of educational tools, including e-learning courses, animated cartoon films, games, and you tube movies. Providing this kind of Information Therapy has helped me to become a better doctor. It ensures that I look at the world through my patient’s eyes, so it is easier for me to be empathetic. Also, because we have ensured that help patients to have realistic expectations, they don’t get emotionally shattered if the cycle fails and they are . They are able to cope better with the unpredictable nature of IVF emotional roller coaster treatment.