o-Patients

If you read this, you are probably familiar with the e-Patient concept. If you read this, you are most likely well educated, have an interest in health care and probably strong opinions regarding health insurance reform, and are very aware of the recent Government push for Health Information Technology adoption. Most people in this country will not be reading this, and most people, while aware of the political aspects of health reform, have no idea that their days of being just patients ended, and they ought to behave as consumers now, and preferably as e-Patients. These are the other patients, or for short o-Patients.

When Consumer Driven Health Plans (CDHP) made their debut, they promised to empower me as a consumer and allow me to make my own decisions on how to spend my health care dollars. I thought this was wonderful, until I realized that as an empowered health care consumer, I now have to spend money I didn’t have to spend before and I have to make decisions about forgoing treatments based on their costs. Empowerment usually translates into additional expenditure of both money and time and a requirement to make hard choices where none were needed before. I would have chosen to decline this empowerment offer, but unfortunately, since my employer was the decision maker, I was not empowered enough and my empowerment became mandatory.

I am now observing the e-Patient and Participatory Medicine movements. These also want to empower me to participate in my own health care. I am supposed to become “equipped, enabled, empowered and engaged” in my own health care. After spending about 20 years in various academic institutions, I think I am pretty well “equipped”. I don’t know what “enabled” means in this context and my CDHP experience makes me very suspicious of "empowered". Just like most people, except of course, the poor, uneducated and elderly, I did search for health information online, and I would like access to my family’s medical records, primarily so I can print out a school immunizations list without having to pay $10 per page. As to “engaged”, engagement is gradually being defined by the Government, the e-Patients lobby and various other interests, as active involvement in maintaining your Electronic Health Records (EHR), including full ownership and interpretation of “raw data” outside a provider organization. I may be equipped, but I am not willing to dabble at the practice of medicine and I refuse to become “engaged” in this manner. I have no desire to spend countless hours aggregating data from various providers, analyzing it (or having it analyzed), proof reading everything and becoming my own Medical Home. But then again, I am not big on “do-it-yourself”. I’d rather leave accounting to accountants, plumbing to plumbers and medicine to physicians. I suppose this makes me an o-Patient, along with the vast majority who is neither equipped, nor enabled and not even remotely inclined to actively manage their medical records at all times.

If you read this, you should also be aware that the Government is proposing to pay providers for adoption of EHR software and Meaningful Use of it. A significant portion of that Meaningful Use is making medical records available to patients for viewing and even downloading through Blue Buttons. This is a good thing and technically rather cheap and easy to accomplish. Josh Seidman PhD has a beautiful and touching story on how availability of medical records online allowed him to participate in his father’s care from afar. But this simple and powerful achievement doesn’t seem to be enough. e-Patients and their innovative startup supporters want much more included in Meaningful Use, and Meaningful Use is quickly becoming the blueprint for our health care delivery system. Meaningful Use includes no provisions, or requirements, for primary care physicians to aggregate and manage medical records for their patient panels, but it does include an ever increasing array of functionality that enables patients to do the same. Providers are not paid to aggregate medical records and patients are touted as the ultimate free resource. Empowerment is looming large.

On April 20, 2010, the Office of the National Coordinator on Health Information Technology (ONC), who is defining Meaningful Use of EHRs and therefore also redefining how medicine is practiced in the U.S., held a public hearing on Patient/Consumer Engagement. The presenters were the usual learned luminaries that you would expect; EHR vendors, silicon chip manufacturers, academic institutions, other research fellows, health care corporations, a couple of community services representatives, innovative startup companies and of course a famous e-Patient. There were no o-Patients in the room. ONC heard exactly what they wanted to hear. It is imperative to allow patients access to their medical records. But they also heard, from the e-Patients representative, that patients need EHRs to have “open APIs” so data can be extracted in any format they wish. I couldn’t help but wonder how many patients or consumers are familiar with the term “open API” and how would an “open API” serve someone like Josh Seidman who just wanted to read the medical records.

On June 5, 2010, the ONC had another public hearing. This one was about using Health Information Technology to eliminate disparities. I was very hopeful that this hearing would be about o-Patients, and it was. The participants were highly educated, very well meaning folks who dedicated their careers to helping the segment of o-Patients who is very ill equipped to join the information age. Along with reiteration of the dubious calls for extracting data from providers’ EHRs, ONC heard some serious concerns regarding quality and availability of HIT in small practices which serve most Medicaid o-Patients, and perhaps these discussions were part of the reason for Dr. Blumenthal’s recent appeal to HIT vendors to include providers serving minorities in sales and marketing efforts. Just like the previous hearing, this public meeting included no o-Patients and no practicing physicians.

So here is a suggestion for ONC’s next public hearing. If you really want to understand what people need and want, why not ask them? When you leave home in the morning take a bunch of public hearing invitations with you. When you stop to fill gas, give an invitation to the attendant. As you pay for the latte at your favorite coffee shop, hand an invitation to the barista. When you cross the park and notice the two older gentlemen warming up on a bench, hand each one an invitation. Hand one to your administrative assistant too. When you go out for lunch, invite your waiter or the little Italian Restaurant owner himself. If you take a taxi there, invite the driver. Assuming you work long hours, you should be able to run into the cleaning crew. Give each one an invitation. If you get a speeding ticket driving home, invite the officer. Finally, when you stop at the grocery store for milk, distribute the remaining invitations to the young checkers and the elderly baggers.

My guess would be that none of these folks will demand “open APIs” or “data extractions” and most importantly, none of these o-Patients will want to be forcibly empowered to take over the active management of their medical records. As long as e-Patientship is optional for those interested, it is a very positive and inspiring phenomenon. We do need to keep in mind though, that all those “open APIs”, “data extractions” and “untethered PHRs” cost money and consume physicians’ time. Since I am not aware of any offers from e-Patients and/or data-seeking startups to pay for actual data collection and extraction, perhaps it would be wiser at this point to spend our scarce resources on health services with broader appeal and better utility. The day the medical profession relinquishes, or is forced to relinquish, its last shreds of responsibility for any semblance of care coordination and continuity of care, and farms it all out to freshly "empowered" unsuspecting patients and their “untethered PHRs”, will be a sad day indeed.