Thank you for being the most open CIO of a major health system and for being courageous enough to engage in communications that are not always easy, to say the least.

Thank you for the level of transparency you have demonstrated over the last couple of months. I would, of course, like to see more but also want to acknowledge your very positive role in the resolution of e-patient Dave data transfer with your proactive stance, turning off ICD-9 code transfers in a record short period of time, followed by your work to get SNOMED mapping in place ASAP.

Thank you for recognizing that the patient has to be at the center of all medical decisions, if they can/wish/want.

Now don’t think I’ve gone soft :-) Or even worse, that I have no longer an opinion. I hope you recognize that the hard questions are always asked in a constructive spirit, to move forward only.

The tasks we all face are daunting enough to make sure we form a true working relationship and not just a polite acknowledgement, with a nod to the vocal e-patient voices. This is much easier said than done, since as we all know, both the world of medicine and academia are averse to changes that are not entirely generated internally.

Because this is all so new, the number of e-patients, informed and engaged in these conversations is small but I am sure that it will grow exponentially in the next couple of years. When I write about constant patient engagement I think of this coming wave of people who will suddenly be much more directly involved in many aspects of their care, including with some control of the EHR.

Preparing now for their involvement could be one of the most important move for the long term success of health care reform.

Because of the time restraints set by the HITECH act this preparation must start with making sure that the final act includes:

a definition of “meaningful use” along the lines of the Markle’s definition and,
a certification process that is not controlled by CCHIT.

John H, David and Josh, what do you think?

It was also one of the reasons for their downfall.

Is the public now ready for PHRs? I haven’t seen the masses suddenly crying out for them. I think a lot of the current PHR movement and push is coming from the technology companies, just as it was in 1999. Not from consumer demand.

What consumers are crying for, in general, is more affordable healthcare and more ready access to their docs. If PHRs enable those things, great! If not, we should put the money to better use to provide the things consumers actually want, not what some technology companies *think* consumers want.

If it helps, I have no particular passion for implanted RFID. I was implanted in 2004 to evaluate the medical, privacy, social, and technological implications of RFID. I wrote a New England Journal article describing my early experiences. The technology works but is not very practical. Today, PHRs (which were not widely available in 2004) offer a credible alternative to implanted chips. I believe in self-experimentation as a way to test ideas and technologies, which is the reason I volunteered for early genome sequencing too. In all my writing and my efforts, I try not to be dogmatic about any technology. Hopefully, as my work with e-Patient Dave illustrates, you’ll find me an advocate of patient-centered technologies. As vice chair of the HIT Standards Committee, I look forward to input and guidance from all e-patients.

John

I completely agree with you that strong consumer/patient representation is critically important if we are to define “meaningful use” in a way. As I described today on http://www.IxCenterBlog.org, one of the nice things about yesterday’s hearing was how clearly the need to focus on the needs of all consumers came through loud and clearly from the so many of the HIT Policy Committee members (e.g., Neil Calman, Christine Bechtel, Deven McGraw, David Lansky, Paul Tang, and others).

That said, there is still a long way to go. First, as you said, it’s imperative that consumers be asked about their experiences, fears and concerns over privacy breaches. Unfortunately, the time crunch of the ARRA statute doesn’t allow for a lot of new up-front input, so we have to rely on past patient experience data. Luckily, some of those I mentioned above have done a lot of that and really want to capture more of it from communities focused on e-patients, participatory medicine, and information therapy (Ix).

Second, the fact that the Policy Committee agreed yesterday that the issues of patient-centeredness and privacy/security should be a theme of every workgroup discussion doesn’t guarantee that they will wind up driving final decisions of HHS. That’s why it’s imperative that all of us continue to emphasize these issues (especially that “meaningful use” must result in consumer access to useful, meaningful information that they can use to better manage their health).

As we move forward, the IxCenter and coalitions like the Consumer Partnership for eHealth are committed to advancing a consumer pathway to improved health through meaningful use of HIT. Input on that from people like you and others in the e-patients/SPM community will be invaluable to making sure that the country gets “meaningful use” right.

As you know I couldn’t agree more with your questions.

I also have the point of view of someone who looks at the system from outside and who cannot understand why the “experts” constantly put artificial barriers to limit what is possible today.

In this case, the stakes are just too high to ask me and all the e-patients (the engaged and empowered patients and caregivers) to believe blindly that the electronic systems designed by experts without ever asking for consistant and continous patient input, will just work and improve our care and quality of life.

Now that the same experts have a real chunk of our money to play with, it does seem completely absurd that there is also no mechanism mentioned in HITECH to let the public ascertain if the funds are well spent.

Common sense must play a significant role in this National endeavor. That means direct, constant and continuous input from the real stakeholders, we, the American public. Otherwise known in the medical world as “the patients”.

The more I think about it, the more I believe that we must add a new focus for the Society for Participatory Medicine. PM will not succeed if we do not convince the Government that patients have a direct and central stake in the conversations.

If the result of HITECH is to conserve the status quo it will go down in history as a pure folly. Let’s hope our common voice can be heard before the HIT juggernaut is launched full speed in its current form.