Re: [projectvrm] VRM in healthcare (even if they don't call it that)

[Peter Herring < >]

Hi Doc, et al

I start with you, Doc, because I haven't had time to chime in here much and you are probably the only one who knows who I am. Pardon me for butting into the conversation at this late date, but this topic really caught my eye.

I just watched the talk - it interested me enough to look up Health Companion and see what they're doing, but the talk, at least, doesn't get into any areas that actually interest me. Interoperability and moving records around can be done from the cloud, great, it's not news. My interest is in actual patient control of those records - with health care practitioners having the various read/write capabilities to do what they do better. Some time ago I wrote in the VRM list about a local search engine I've been working on that seems to be to be quite VRM (though I hadn't heard of VRM when we began) because it turns search into request - which you call broadcasting, I believe - for precise goods/services within time, location, price (plus other fine tuned) criteria - without revealing a shred of PII. The consumer controls the process, can set alerts (based on criteria) for future goods/services, buy/sell/trade/give for free on a P2P basis, etc., again, without revealing PII - until such time that they want to create a trusted relationship. This system creates a great deal of data that we call "time and location based active buyer data" (you can throw price and other criteria - e.g. locally owned - into the equation) that is immensely useful to vendors without any PII - in fact, far more useful that your average historic (tracking) data. But enough.

The - hopefully - pertinent part of this is that this system is the commercial arm of a system that I first worked on with another team when we were starting a business called 7 Steps to whole Health - that business shelved because we were looking for money when the crash came, and I moved on to other things. We wanted a system whereby our members (patients) could get any information they wanted, including goods/services, about their health without revealing PII. We called it Permission Based Web and it was to be our health search engine. In the process I brought on an acting CTO who had built what I consider to be a true patient-centric PHR - we've since created an app that incorporates a small part of the system, emergency health information. It works on the simple principle that if a patient truly controls their records there is zero need for PII associated with the records. Health organizations have at their core that they need to bill for services, so all procedural and pharmaceutical records must be connected - however "securely" - to PII. To be patient controlled, PHRs need to be able to amalgamate health information from various sources, stripped of PII, and password protected by the patient. Health practitioners and institutions need various read/write capabilities - in the system designed by my biz partner, they have read capabilities for all records that originated with them; read capabilities for other records are granted via password access (and those records can be segregated into "privileged views" - not everybody needs all your health information). As above, with the commercial side of the system, a useful aspect of this system is that amalgamated, live data (e.g. tracking epidemiological) can be easily provided without endangering anyone, and patients can participate in live group studies with no personal exposure.

As I said above, enough - the point is not to go through tech details, but to assert simply that patient controlled records are exactly that, patient controlled records, and it's technically but not essentially difficult to achieve so long as you separate two very different needs: one, to provide health care and generate historic records; two, to bill for it. I believe that a kind of variant of the precautionary principle comes into play here, such that health care institutions should be in the position of proving why they need to own the data. Begging a very long discussion, it is capitalistic health care provision that mandates silos in the first place - and Balkanized silos mandate "interoperability"; imagine the scenario if the standard from the beginning was portable, patient-controlled records. We would be having a very different conversation.

I'll go look at health companion and see what they're up to, but the home page sends up two immediate alarms: connect with facebook or linkedin - really? Admittedly, I don't have to do that, but I can't find out anything more without signing up which I never like - I put up enough commercial websites in my past life to recognize the wide end of the funnel. I have to say, at first blush, I tend to agree with Adrian - I get the willies when I see "personal health records" systems set up by doctors, or anyone in the health care system, because I find it difficult to believe that they can actually have that perspective - if they were politicians we would say they have conflicts of interest and the nature of those is that they tend to create conflicting outcomes. Any way, I'll go sign up and look, there's always unsubscribe.

Hope this might provide a useful POV. I realize that, not being here often (lack of time, not interest!) means I may have missed something crucial in earlier conversations and so am talking a line discussed long ago - if so, apologies.

Thanks,

Peter

On Fri, Feb 20, 2015 at 6:16 PM, Jim Pasquale < " target="_blank"> > wrote:

I'm in

Sent from an iPad

On Feb 20, 2015, at 9:00 PM, =Drummond Reed < " target="_blank"> > wrote:

Count me in. Who else?

On Fri, Feb 20, 2015 at 5:59 PM, Adrian Gropper < " target="_blank"> > wrote:

How would Sat 2/28 at 3PM EST work for everyone? Otherwise, someone please suggest something else.

Adrian

On Fri, Feb 20, 2015 at 8:52 PM, =Drummond Reed < " target="_blank"> > wrote:

Adrian: I can't speak for others, but Tuesday morning 10AM ET doesn't work for me. However I like your idea of a weekend session because that way we won't feel the same time pressure as during a working day. I for one would really like to understand in depth your perspective and lessons learned in terms of VRM for healthcare since it's something I'm being exposed to more and more with regard to XDI. 

Since my wife will be out of town next weekend (i.e., Feb 28/March 1), I'm flexible anytime on Saturday Feb 28 after noon PT and Sunday March 1 after 10AM PT.

What would work for you and others?

On Fri, Feb 20, 2015 at 5:03 PM, Adrian Gropper < " target="_blank"> > wrote:

Tuesday at 10 AM EST is the only time that day and it might be too early for the West coast folks. Thursday I'm traveling. I'm happy to do this on the weekend any time between 10 and 6 EST. We don't get out much in the Boston area these days.

Adrian

On Fri, Feb 20, 2015 at 6:53 PM, =Drummond Reed < " target="_blank"> > wrote:

Adrian, I just got back from a lunch in which this was pretty much the whole topic. So I'm hugely interested in joining this Google hangout or Quicochat session with you.

What time frame are you thinking about? If it's next week, I'd offer up next Tuesday or Thursday. Right now I'm fairly flexible for those two days, so why don't you suggest a time frame that works for you and let's see how well it works for those folks on the list who would like to attend.

Thanks,

=Drummond  

On Fri, Feb 20, 2015 at 11:43 AM, Adrian Gropper < " target="_blank"> > wrote:

Let's set up a Google hangout or Quicochat http://qiqochat.com/213/hotline and we can go through the presentation or not. Suggest a time or two and anyone else will join.

Adrian

On Fri, Feb 20, 2015 at 2:34 PM, =Drummond Reed < " target="_blank"> > wrote:

Adrian, as I was watching it I was thinking about you with almost every slide.

I'd personally be very interested in understanding your perspective in much more detail—not necessarily a slide-by-slide dissection, but it would help me to understand what the real barriers are to VRM in healthcare. I know it's a battle you've been fighting for a very long time, and your battle stories are incredibly valuable.

Thanks,

=Drummond  

On Fri, Feb 20, 2015 at 10:43 AM, Adrian Gropper < " target="_blank"> > wrote:

I'm sorry Drummond but I find this well-meaning talk to be misinformed and misleading in almost every way. This is a field that I've devoted the last 10 years of my life and well over $1 million to and to see other doctors (like this entrepreneur, I too had a radiology perspective on the problem) being seduced by a toxic series of national policies makes my blood boil. I write this because, "Once fooled, shame on you. Twice fooled, shame on me." and I can't let this go. (the you here is the presenter, of course).

This is not VRM and, at least in healthcare, thinking that hospitals will introduce VRM is delusional. I'm happy to dissect the presentation slide by slide if folks on the list are interested.

I'm just as happy to urge you all to just move along, there's nothing to see here folks...

Adrian

On Fri, Feb 20, 2015 at 12:26 AM, =Drummond Reed < " target="_blank"> > wrote:

If you're interested in how the principles (if not the name) of VRM are coming to healthcare, watch this 14 minute video (+6 mins Q&A) of a presentation at last September's Stanford Medicine X conference from the Chief Innovation Officer of Health Companion.

It's all about patient-centricity. You'll see several slides that look exactly like personal clouds exchanging data under user control, just with different labels.

You'll also see a nice plug for DirectTrust, which grew out of the secure email-based health data sharing work that Brian Behlendorf talked about after the dinner at the last VRM day.

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Adrian Gropper MD
Ensure Health Information Privacy. Support Patient Privacy Rights.
http://patientprivacyrights.org/donate-2/ 

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Adrian Gropper MD
Ensure Health Information Privacy. Support Patient Privacy Rights.
http://patientprivacyrights.org/donate-2/ 

--

Adrian Gropper MD
Ensure Health Information Privacy. Support Patient Privacy Rights.
http://patientprivacyrights.org/donate-2/ 

--

Adrian Gropper MD
Ensure Health Information Privacy. Support Patient Privacy Rights.
http://patientprivacyrights.org/donate-2/