Interesting new e-patient resource: Medivizor

Added 9/11/2013:  I do not endorse this product. I have no idea if the information it gathers is reliable. I add this because in a press release the company lists me in people who have “covered” their service; I want to be clear, as it says below, that although I wrote about it, I didn’t endorse it. Frankly it feels a bit dicey that a careful curator of information would be a little bit incautious about the meaning of words.

I get a lot of requests to look at new products, websites, services. If I were rich and retired (or tenured :-)) I’d spend my whole life exploring, but I’m not, so I can’t. This is one, though, that caught my eye, because it proposes to automate something that can normally only be done by peers: filter all the information out there and tell you what’s useful to you.

If this works out, it could become an essential resource for engaging patients and families.

Disclaimer: I haven’t been able to vet the site, testing it as someone with “skin in the game” because the company is currently only handling a few conditions. Also, I’m open to reports of similar products that claim to do what I describe here. This is a description of what interests me, not a final and absolute endorsement.

Okay, enough fine print:

Medivizor is a startup that culls literature and other resources, including the social web. They select portions relevant to you (based on a questionnaire and your feedback), rephrase it in ordinary language, and send it to you. As their site says:

Medivizor aims to fulfill its mission
by providing personalized information updates that are
relevant,understandable, and actionable
for people with serious medical conditions or those who care for them.

Hallelujah! Instead of the often-heard “patients can’t understand this stuff,” they make it: (again from their site)

• Relevant – we aim to provide only information that is truly relevant.
• Understandable – we provide the information in words most can understand.
• Actionable – as much as possible, we’d like to help you identify your possible options.

In my view, that’s what you’d get from a peer (a patient with your condition) or an expert who knows you personally and can speak in your language. That’s important, because if experts can’t convey their expert knowledge to you, in terms you understand, you can’t use it, so you can’t be enabled, so you’re disempowered.

Why that matters:

In the past year some of my speeches have mentioned the field of Human Performance Technology (HPT), which studies the factors that lead to success or failure on the job. If an employee fails to do something they should have, there are many possible causes, for instance

• Did they know they had the responsibility to do it?
• Did they understand when they’re supposed to do it?
• Did they recognize it was time to, in this instance?
• Did they have the right instructions to do it?
• Did they understand the instructions?
• Did they have the physical ability to do it?
• Did they know how to recognize when it’s been done correctly?

Get the picture? If the cause of a performance problem is in one factor, it’s a mistake to conclude that it was another – just as wrong as if you treat appendicitis with an elbow bandage. So as medicine seeks to encourage patient engagement – “the most under-used resource” – it’s essential that patients have access to relevant, useful information they can understand.

As I said in 2011, clarity is power.

Of course, there’s vast information out there, more than anyone can keep up with. Their site adds:

We believe that we can solve the ‘needle in the haystack’ challenge. By knowing more about the person who’s sick and their particular condition, our technology can sift through available information and pick out just what’s credible and relevant.

I hope they can do it. And here’s the corker – I hope:

We couple this with insights from our medical team and from information gleaned from the social web

If they can do that successfully (they vet what they find) it’ll be seriously revolutionary, because it’ll be the first service I know that views patient-to-patient discussion as a valid source. (Of course, smart patients know it’s relevant!  As I said in my TEDx talk, “Patients know what patients want to know”!)

Breast cancer patient @ChemoBrainFog (AnneMarie Ciccarella) is pretty enthusiastic: see her January post, subtitled Step Aside, Dr. Google: Enter Medivizor.

Better than Watson?

A lot’s been said about how much IBM Watson will help doctors by gathering vast information. But I have a big concern about how it’s being implemented in medicine – a mortal fear, actually – which Medivizor may solve:

In much-publicized Watson installations at places like Memorial Sloan Kettering, IBM is letting the client put blinders on Watson so it only looks where they tell it to look. I’ve mentioned to some Watson people that I think this is a fatal flaw, because it guarantees that Watson with blinders will never know what patient communities know.

And if Medivizor works out as it might, it could beat Watson at that game. (MSK is a sore point to me, because for whatever reason, they won’t tell kidney cancer patients what patients on ACOR told me: there’s a treatment that usually doesn’t work but sometimes completely banishes the disease – high dosage interleukin-2. (It worked for me.) People who ignore IL-2 should put blinders on Watson???) (This is no slap at MSK’s experts – it’s a big slap at the superstition that the only useful information comes from the usual authorities.)

Who should say what patients (and doctors) get to learn about?

Will we someday see “medical Jeopardy” with Watson against Medivizor?

Better yet, who would be the judge? Informed, engaged patients, perhaps? Ideally, to me, it’ll be a panel of e-patients, empowering clinicians, and open-minded researchers.

Participatory medicine.