Medpedia launched recently. It’s a great idea, a ‘wiki-style’ source of authoritative health information. You can find it at www.medpedia.com.

It will distinguish itself by limiting contributors to those MDs, and PhDs credentialed to address the clinical topics.

So far, so good. What could be better? Three things.

- First, include contributions from “credentialed” patients and caregivers themselves – that is, those who have encountered the disease “up close and personal,” who have demonstrated that they understand it, have managed it and survived it – or not.

That important patient information could be in a separate segment, perhaps, or noted as such, but it should not be ignored. Patients and caregivers have important contributions to the overall understanding of the condition itself, as well as to the experience that other people will have. Credentialed clinicians might well know how to describe metastatic cancer or viral replication dynamics, but only a credentialed patient can offer insights into the interior state of the person who has that experience. Likewise for the caregiver who helps them.

Yes, it’s true that those patient insights can be found on other sites, but those sites may not be as accurate as Medpedia seeks. Lacking these patient insights Medpedia is replicating on the web what happens far too often in clinical settings – clinicians and patients talking different languages and “past” each other, rather than “with” each other.

- Second, address controversies upfront. Clinical knowledge is growing at a rapid pace. As one edge leads, disagreements will ensue. As the other edge trails, likewise. These controversies are some that have spawned patient groups to go their own way and have allowed charlatans to prey on people desperate for help. Acknowledging those controversies will tell more of the truth about health care – that it is not exact, that there are unknowns and that important individual differences are at play in the course of any illness.

- Third, provide some “so what?” information. Medpedia is developing into a great encyclopedia and that is fine as far as it goes, but today’s – not to mention tomorrow’s – health care will not be as accessible as anyone – clinicians or patients – would like. Information is only the beginning and clinicians don’t need the information on Medpedia. They know it. Patients need the information, but they also need to know what to do with it. This is the thorny part, and it must be addressed.

Don’t take my word for it. Check out the conditions on Medpedia. Today’s version of Alzheimer’s, for example. I’m no expert, but in keeping with what I hear from those who are and related to my three hopes for the future of Medpedia:

- First, contributions from “credentialed care givers” would say that Medpedia estimates of the $45,000 annual cost of care is a gross underestimate of the true costs – which include lost income to caregivers and the known impact on their own lives in higher mortality and morbidity.

- Second, contributions from treating clinicians would indicate that with some patients they get better results than this article would indicate. Perhaps those insights would improve the progress towards clinical solutions for the condition.

- Third, both expert clinicians and caregivers would urge some actions for anyone who suspected the onset of Alzheimer’s – such as early diagnosis so the patient and family can make adequate financial and legal plans and identification of support systems for the caregivers.

All the best to Medpedia. May it begin to fill some important gaps in health care.

This entry was posted on Tuesday, March 3rd, 2009 at 11:00 am and is filed under HIT/Health Gaming, Innovation, Social Media. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.