Chapter 1: Lost in the information maze?
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 This is because they have access to too much information, a major chunk of which is wrong, inaccurate or outdated.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.
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 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.
There are also initiatives that provide quality seals to ensure that the information being provided to patients is reliable and of top-notch 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 (https://www.uhc.com/health_and_wellness.htm) and Aetna (https://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, since 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 worlds largest free patient education resource centre 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:
- Promoting self care and helping them to do as much for themselves as possible.
- Providing them with evidence-based guidelines, so that they can ask for the right medical treatment that they need . no more and no less.
- Equipping them with veto power, so they can say No to medical care when they dont need it, thus preventing overtesting and unnecessary surgery.
What of the future? With advances in telemedicine and internet penetration and speed, it is 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 make informed choices about their health!