What’s the point?

February 5, 2023 - By Matthew Holt

The (not huge) world of Health 2.0, participatory medicine and ePatients has been fretting itself about a comment Susannah Fox (all hail) elevated into a post called “What’s the Point of Health 2.0”.

Here’s an excerpt from the comment from DarthMed,

The remaining 95% of “patients” out there are not motivated to become informed, or invest the time/energy/money in using any of these tools. These are the folks that know that fast food isn’t healthy, but are just too tired to choose differently. Some (emphasis on some) will do a standard google search when they receive a new diagnosis at best. Yet these are the folks – often folks with multiple chronic (often preventable) health problems, many overweight, on multiple medications, sometimes social problems – that have the real issue that needs fixing.

So we can all sit and perfect the tools for a few folks that never needed them anyway, or we can recognize that the kinds of solutions required for healthcare in the US today have nothing to do with fancy IT, or prioritization on search engines, and everything to do with low-tech, unsexy approaches toward grass-roots public health. Sorry to be the voice of reality guys.

and here’s (an excerpt) from another DarthMed made on Fard Jonmar’s blog.

Today we are looking at millions being pumped into health-app start-ups, none of them profitable (or nearly profitable). Billions being pumped into linking electronic health records that ePatientDave showed us can be quite inaccurate anyway (given his GHealth uploading experience, albeit with claims data). So, after a few billion dollars of public and private investment we will have some iPhone apps that “self-informers” will use, a few “vibrant” patient communities of 10,000 patients with only 1,000 patients active (does anyone hear the sound of “disruption” here?), and a vaguely interconnected network of health information space junk.

OR, we legislate that patients should be entitled to receive within 24 hours of demand a one page health summary from their doctor + a copy of test results that they ordered and scripts that they wrote in the past 12 months, and leave it up to the clinics to work out how they deliver on it. Period. Then, lets use the billions left over, and our passion to do more diabetes screens in schools, factories; more mammograms; more childcare for teenage moms so they can go to school/college; more after-school activities to promote fitness and wellbeing at an age where behavior modification can make a big difference.

Unfortunately most Health 2.0 debate revolves around defending new technologies as the solution. And in the process, we’re missing the main point that many preventable social and health problems are just festering away. When technologies are the answer, they take off by themselves (case in point, Google Maps vs Google Health). And I’m sorry, but the HIT horse has been whipped and crying, trying, dying for years.

I’m a little baffled by both of darthmed’s comments.

Yeah, it’s hard to change behavior. Yeah, it’s a good thing to have more preventative and primary care.

But Health 2.0 communities and tools are clearly helping patients and saving lives here and abroad. And there’s oodles of research from Kate Lorig/David Sobel and lots of others that online (and offline) support groups help patients achieve better outcomes at lower costs.

So is the complaint that spending on building Health 2.0 technologies is crowding out spending that should go to preventative care? I think that’s the point of Darthmed’s comment on Fard’s piece. If so, that’s totally laughable. Maybe, maybe (even counting Revolutions big dump) a total of $1.5 billion has been spent in recent years building Health 2.0 technologies. We spend $250 Billion a year on cardiac treatments that have very dubious efficacy. Americans spend $5 billion a year on supplements that don’t do anything (according to most scientists). We spend $14 billion a year on a single drug (Lipitor) that many people say is harmful and overprescribed, let alone has sufficient evidence of doing what it says it does (reduce death from cardiovascular disease)

The first Darthmed comment is more crucial. Are we building tools for just already engaged patients? My answer would be that the tools allow patients who had the potential and latent desire to be engaged get involved very easily.  And it’s just not true that patients using Health 2.0 tools/communities would be equally engaged without them. So whether it’s 5% of people or 30%, it’s a real impact for them. Clearly we don’t have all levels of patients as engaged as some of us might like-but more Health 2.0 technologies will be developed to bridge that gap. And if we don’t get to everyone, so what? We’ll get to more people and do more good than giving up.

Weightwatchers has had success showing that easy tools plus communities can lead to behavior change. That’s exactly what Health 2.0 does (combine tools and community support). And yes there are still obese people. That’s life-not everything will work 100%. But Health 2.0 content and communities are clearly being used by millions of people, and I believe that tools/data part is going to follow along.

But I’m most puzzled by darthmed’s claim that instead of Health 2.0 we should just “legislate that patients should be entitled to receive within 24 hours of demand a one page health summary from their doctor + a copy of test results that they ordered and scripts that they wrote in the past 12 months, and leave it up to the clinics to work out how they deliver on it.”

Err…who does he think is behind that demand? It’s the predominantly Health 2.0 crowd behind www.healthdatarights.org leading that charge. The Health 2.0 technology crowd would love that easy access to data.

How DarthMed sees that as contradictory to Health 2.0 is beyond me. And maybe it’s just intellectually sloppy on DarthMed’s part to talk about billions of public dollars going into linking records, and equating that with Health 2.0. The ARRA/HITECH stimulus dollars are primarily about getting physicians to use electronic clinical workflow tools, and part of that is a demand to make the data able to be presented to patients and to other facilities’ systems. That’s exactly what Darthmed wants (and what the Health 2.0 evangelists of whom I’m barely one) want too.

I might agree with Darthmed that instead of the modest carrot the government is offering ($44K per physician), they could use a much bigger stick (e.g. no data, no pay) to get to the same place, but in the real world of Congressional politics, that isn’t going to happen.

So I’m bemused by Darthmed’s demand that “Health 2.0 – prove yourself quickly or step aside” Health 2.0 is part of a much larger societal process, and it ain’t going anywhere while there are sick people and while technology evolves so that sick people and those who care about them can use it to help themselves.

And if we’re really all for diabetic screening et al for the underserved (and I am) why isn’t Darthmed screaming about the collapse of the health care reform bill? In that as part of his “buyout” Bernie Sanders got $14 billion increased funding for community health centers which do exactly what Darthmed is looking for. Surely the loss of that funding as health care reform dies is far worse than any “waste” on Health 2.0 technologies.