Medpedia goes Wiki. Does it Go Far Enough?
March 3rd, 2009
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.
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March 3rd, 2009 at 12:04 pm
You have absolutely hit the nail on the head with this post Glenna. I couldn’t agree more. Until we recognize and act on the fact that medicine/healthcare is a two-way street, where the patient (and his/her caregiver) and the health provider are partners, we will never fully achieve the level of high quality care we all talk about.
The frustrations patients feel are one of the reasons I believe Social Media, Health 2.0 and the like are taking off–patients are not only looking for trusted information, but are desperate to be part of the conversation. If the doctors won’t speak (really speak, not just pay lip service) to patients, then as we are seeing, patients are going to take their conversations elsewhere.
In so many ways, the Internet has become a giant Waiting Room where patients, caregivers and health professionals can share ideas, information, and suggestions.
Medpedia would do well to listen to your suggestion.
March 3rd, 2009 at 12:31 pm
I couldn’t agree more, Glenna. I try not to flame about this, but on the e-patient blog we keep seeing tons of evidence that it’s an error to presume that an MD degree is inherently the right criterion for declaring information reliable.
I’m the author of the post on our blog Medpedia: who gets to say what info is reliable?. It’s generated dozens of comments, with a ton of additional evidence being shared about ways that existing Medpedia data (vetted by doctors of course) is wrong, shallow, out of date, etc., in ways that are clear to people who are NOT qualified to vet articles by the Medpedia criteria. I hope people here will add to that, with more comments here or anywhere.
This is really important. We’re moving toward a new world of “participatory medicine” in which e-patients are empowered and vigorously engaged in their care. It’s an error-prone old-school approach to figure, as Medpedia apparently does, that Doctor Knows Best. Doctors today are flooded with data, as my post details, and things change too often. Patients can help.
Thank you for shining a spotlight on this! Keep in touch.