Tuesday, September 03, 2013

Online forums for patients and doctors

It’s heartening to see so many bulletin boards and forums where patients can learn more about their illnesses. These online platforms serve a very useful purpose in educating patients because they allow for free exchange of information and ideas.

Online boards seem to be of 2 types : one where patients talk to doctors ; and the other where patients talk to one another. They seem to serve different purposes. On the medical bulletin boards , patients ask questions which are answered by expert medical doctors who provide advice . Their primary purpose seems to be to help patients become better informed about their treatment options, so they can verify they are on the right track. On the patient bulletin boards , patients talk to each other about their personal experiences . They will commiserate with each other ; talk about their failures and successes; and compare notes about treatment protocols and outcomes. Their primary purpose seems to be to provide emotional support .

This kind of artificial demarcation makes no sense whatsoever . While I understand the purpose behind the boards is different and that many patients will use both platforms, why not allow patients to make the best of both worlds ?

I understand that medical knowledge is different from emotional support and that patients are much more likely to get support from other patients, rather than from doctors. Similarly, most patients would rather trust advise which comes from a MD, because they trust that the doctor knows what he's talking about, rather than accept advise from another patient, who maybe pretty clueless herself.

The reason these boards have evolved differently is a historical accident, but makes no sense in this day and age of expert patients and empathetic doctors.

One simple way of making these boards much more useful would be to ensure that doctors participate actively in the patient forums.

One of the problems with the patient forums is that many patients who are very articulate and vocal on these forums are not very well informed about medical facts . They often have preconceived notions , most of which are based on their personal experience, rather than sound medical evidence. This is why they will often provide well-,meaning advise which can actually be wrong – and may sometimes even be harmful.  Newbies are often not sophisticated enough to separate the wheat from the chaff . Many naively believe that the “senior” members on these boards ( those who have published many posts over many years) must be well-informed. However, this is not always true, because there’s no mechanism for medical quality control on these sites. Patients who are articulate but badly informed can create a lot of harm by perpetuating myths and misconceptions and confusing others. Some of these discussions can get quite heated because they are not based on facts, but on opinions.

Having doctors participate in patient bulletin boards can help to prevent some of these problems. A doctor can provide reliable advise on a particular therapeutic option , because he is a professional , and has enough medical background to be able to interpret the pros and cons. He has access to evidence-based research articles in medical journals , and he can interpret these for patients, so they can make well-informed decisions, based on reliable data.

While it’s true that doctors can be biased – and that some maybe tempted to use the boards to promote their practise,  a good moderator can easily control this. Also, patients are not stupid and they are capable of figuring out what's marketing hype what is sensible advice . Patient forums should encourage doctors to participate , so that the medical authenticity of the conversation improves. Another major advantage is that doctors learn to be much more empathetic when they participate in patient forums. When doctors read what online patients feel , they are much better able to appreciate the patient’s perspective when they see patients in real life in their own practice.

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