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 This is because they have access to too much information, a major chunk of which is wrong, inaccurate or outdated.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.