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Wednesday, June 6, 2012

Engaging with Patients in NwHIN Governance

So now that we have a couple more weeks to respond to the NwHIN RFI, I have some additional thoughts on it to share (even though I thought I was finished).

One of the most important principles in governance in the development of standards and specifications is that all affected parties be able to participate.  From a Health IT perspective, this includes regulators of products, developers of products, purchasers of products, and perhaps most importantly, the users and beneficiaries of products.  And when we talk about interoperability, there are at least two sides of the coin for many of these groups, because there are senders and receivers, querants and responders, et cetera.

What is most challenging though is for patients to participate in these discussions, in part because:
  • Unlike the rest of the stakeholders, patients rarely have funding to participate
  • This is not part of their job (there are a couple of pretty well-known exceptions).
  • This is not part of their training (although some patients know more about their conditions than many doctors).
There are several organizations that represent patient interests, and which many patients are members of.  But those organizations have their own agenda, which is often intermingled with that of the patients they serve.  This isn't a diss, it is simple recognition of the way that organizations work.

Patients need to have a voice in NwHIN Governance, especially in setting priorities, evaluating risks and benefits, but they are challenged with respect to funding, time and experience.

How should NwHIN Governance, and the Health IT Standards ecosystem support patient participation?

Let's look at the three components:  With regard to training, as I point out, many patients do have "training" sufficient to participate.  We heard from several of these "expert" patients at the Patient Access Summit earlier this week, and there are numerous others out there.

The other two issues are time and money.  Time means time away from work, family and even treatment.  Money includes travel expenses (flights, hotels and meals), as well as lost income from days away from work.  The time away is challenging, especially if it raises issues with respect to treatment.

I believe that there should be some sort of fellowship opportunity here that would cover the costs of patient participation in governance activities.  This would include modest compensation for participation, and also address and prepay travel expenses.  Prepaid travel is important for people who don't have funding, it means they don't have to deal with a lot of hassles with respect to reimbursement -- have you ever had to attend a conference in DC, hotel room prices are killer.  It should also include some opportunities for the fellows to engage in related activities and conferences.  I don't know how it's funded, but I don't think the amount of funding would be that huge, perhaps $20,000 a year per fellow to cover travel and a modest stipend.

To keep the patient voice fresh, fellows would be appointed every 2-3 years (A single year simply isn't enough time to come up to speed and have an impact), and there could be several, so that new ones rotated in each year.

Selection of patient fellows could be something that was undertaken by the NwHIN governance authority, and the process could be overseen by ONC, perhaps in the office of consumer engagement.


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