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Bringing Patients into the Health IT Conversation About “Meaningful Use”

The Obama health team at HHS and ONC are gradually establishing the rules that will determine how approximately $34 billion in ARRA/HITECH funds are spent on health IT over the next several years. But there is a “missing link” in these deliberations that, so far, has not been addressed by Congress or the Administration: how the patient’s voice can be “meaningfully used” in health IT. After all, we, the taxpayers, will pay for all this hardware, software, and associated training. There are many more consumers of health care than doctors or health care professionals. Shouldn’t we have a say in what matters – in what is meaningful – to us?

It may have been an oversight, but patients and consumers have been left very much on HITECH’s sidelines. The attention and the money is squarely aimed at the health care providers – doctors, clinics, and hospitals. The Act’s intention is to create “interoperable” electronic health records that, in the future, will be more accessible to them: doctors, clinics, and hospitals.  This is a policy that is tied unnecessarily to an outdated vision. It is provider-centered, paternalistic and top-down. But it could be re-imagined to take advantage of the new ways millions of consumers, patients, and care giving families are using information and communications technologies to solve problems, form online communities, and share information and knowledge.

We’re moving more fully as a society into the Age of the Internet and, as the economist Jane Sarasohn-Kahn’s landmark study The Wisdom of Patients compellingly showed, patients are far ahead of the health care industry in using it to advantage. Consider:

  • According to the latest Pew poll results “about half the public (49%) turned to the internet for information about the [swine flu] virus. Moreover, asked which news source had been most useful in this regard, 25% of respondents named the internet, putting it at the top of the list of information sources in terms of utility.”
  • An earlier Pew poll showed that between 75% and 80% of American Internet users have looked online for health information, an estimate consistent with similar polling from Harris Interactive’s 2009 data. 78% of home broadband users look online for health information.
  • Going online makes a difference in terms of decision-making, especially for e-patients with a chronic illness or a new diagnosis, according to Pew:
    “For example, 75% of e-patients with a chronic condition say their last health search affected a decision about how to treat an illness or condition, compared with 55% of other e-patients. Newly diagnosed e-patients and those who have experienced a health crisis in the past year are also particularly tuned in: 59% say the information they found online led them to ask a doctor new questions or get a second opinion, compared with 48% of those who had not had a recent diagnosis or health crisis. Some 57% of recently challenged or diagnosed e-patients say they felt eager to share their new health or medical knowledge with others, compared with 45% of other e-patients.”
  • The public appears ready to embrace shared online electronic medical record-keeping. A just-released joint NPR/Kaiser Family Foundation/Harvard School of Public report is summarized in the graph below, indicating not simply privacy concerns, but the strong conviction that this risk would be accompanied by the benefits of improved personal care and overall quality improvement.

  • The public also seems ready, as are some physicans, to use online methods to establish patient-physician relationships and provide care services. As David Kibbe recently reported on THCB, online care and consumers’ familiarity with and use of tele-health is steadily expanding.  American Well and TelaDoc, Google Health, Microsoft HealthVault and a rapidly growing number of companies are part of an evolving ecosystem that speaks directly to the interest of patients and health consumers to engage in many kinds of online health experiences.
  • The e-patient public is showing signs of engaging and even confronting established Medicine on the issue of access to their health data.  A Google search on “e-patient Dave” yields almost 9,000 hits, the majority of these related to Dave deBronkart’s revelation, covered extensively by the Boston Globe, the New York Times, and hundreds of blogs, that his hospital medical records were incomprehensible and often inaccurate.  Dave, a kidney cancer survivor, had taken up the offer by Beth Israel Deaconess Medical Center’s CIO, John Halamka, MD, of automated data transfer between the hospital’s IT system and Dave’s Google Health account.  The good idea was to help Dave create a personal health summary at Google Health that could be refreshed by information from his doctors at BIDMC, and always be available to him as needed. Dave found, thought, that the hospital’s IT system merely passed on billing diagnoses and codes, many of which were neither accurate nor up-to-date.  The upshot:  an apology from Halamka and BIDMC, a meeting with Google Health’s team, and a change in policy at BIDMC.  From now on, only physician-generated and reviewed diagnoses and problems will transfer to Google Health from
    BIDMC.  This story of a modern day David representing e-patients versus a Goliath from the health care industry continues to reverberate in the industry and to have consequences for the future of personal health
    records.

So why not include health consumers and patients in the meaningful uses of health IT?  Here’s a short list of ideas about how to do this, provided in part by Don Kemper, the founder and CEO of HealthWise. We agree with his suggestions that “meaningful use” ought to include the routine practice of electronic communications with patients and care givers, starting with these five areas.

  1. Prevention and screening reminders. As appropriate, these should be shared along with a personal health plan and full access to one’s records.
  2. Patient decision aids for major surgery and procedures. This might include messaging pre-and post-surgery to help avoid waits and delays.
  3. Patient instructions for acute and chronic conditions. What to do at home; what signs of problems or improvements to look for; when to call if symptoms develop or improvements don’t occur as expected.
  4. Guided self-management messaging for chronic conditions.  Instructions in self monitoring, lifestyle, medications management, action plans, etc.
  5. Visit preparation for scheduled visits.  This could include questions to ask the doctor or provider and biometric instructions, e.g. the need to fast before a test.

Let’s ask the question another way:  If the HITECH monies are spent on CCHIT certified EHRs that can’t do any of these patient-centered tasks, or EHRs that don’t come equipped with the features and functions to extend health IT capability to the patients and consumers, do we really think that the money will have been spent wisely?

But that’s the pathway we seem headed down, led by the vendors.  As Dire Straits once said, “money for nothing….those guys ain’t dumb.”

David C. Kibbe MD MBA is a Family Physician and Senior Advisor to the American Academy of Family Physicians who consults on health care professional and consumer technologies. Brian Klepper PhD is a health care market analyst and a Founding Principal of Health 2.0 Advisors, Inc. Their collected collaborative columns, including the first 3 columns in this series, may be found here.

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inventory softwarehealtMichael McBrideRobPam Drew Recent comment authors
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inventory software
Guest

Technology has truly advanced the medical field, but medical professionals should also be careful to not overindulge on IT. There should be a clear line between necessity and luxury.

healt
Guest

Thank’s. When doctors can be fairly reimbursed for their time AND enough of them want healt to care around a iPod to assist them with diagnoses.

Michael McBride
Guest

David: Margalit Gur-Arie’s comments should not be overlooked as they are significant. The government is not consulting physicians in order to create effective legislation, so it’s unlikely the healthcare consumer’s views and opinions will weigh heavily in Congress. Nevertheless, they forge ahead in their mad dash to produce sweeping legislation dramatically affecting an industry that in short order will encompass a fifth of the nation’s GDP. The three stages of healthcare (diagnosis, treatment, payment) can all be enhanced by EHR adoption; however, ARRA/HITECH’s stated goals of improving patient care while simultaneously lowering its costs are not directly addressed through the… Read more »

Rob
Guest
Rob

My doctor is fairly young and seems to be as wired as his employer permits. He is really happy with the extra BP readings, and said more or less just what you did about environmental factors affecting readings. I used to be a phlebotomist, and I remember folks coming in to donate with sky-high BPs who swore up and down that it was usually normal. I hope you can help your mom find a balance – when I first took BP meds, I had to be really careful standing up or even getting out of bed. You may be able… Read more »

David C. Kibbe, MD MBA
Guest
David C. Kibbe, MD MBA

Rob: Thanks for your comment. I’d be interested in your doctor’s opinions about getting more, and presumably better (more accurate), BP readings from you at home. It’s simply amazing the number of people who are treated for hypertension solely on readings in the doctors’ office or clinic, an environment where social interaction and other factors often increase BP from baseline. My mother, who is 89, has had several syncopal episodes (fainting spells) due to over aggressive, completely unnecessary treatment of her “hypertension.” But she has such absolute faith in her provider, that she wants to stay on the medications that… Read more »

Rob
Guest
Rob

I’m not sure if I count as an early adopter, but I’ve been using HealthVault for a while and am glad I got started. No doubt there are big issues to address, but the benefits – even at this early stage – are great. My doctor is getting more blood pressure info from me, and the flipside of that is that I’m thinking about my BP more often. Win-win!

David C. Kibbe, MD MBA
Guest
David C. Kibbe, MD MBA

Dear Pam: I think you are 100% correct that there needs to be a professional helping most patients organize their summary health information, make sure it’s accurate, keep it relevant (as you point out not everything in my medical record is or stays relevant), and up-to-date. I think that e-Patient Dave, Judy Feder, and many,many others are looking for, and finding very difficult to obtain. Having said that, I do think that software can get a whole lot smarter at aiding us with these tasks. Last week, I was on a panel for a Congressional briefing in DC on Mayo… Read more »

Pam Drew
Guest
Pam Drew

Dear Dr. Kibbe, Computer-summarized primary diagnoses on Kaiser electronic medical records, selected from a limited number of common diseases, and presented by the most recent four (it appears) immediately strike the eye of any health professional accessing the record, In the era of 9-minute visits with the doctor if the top four aren’t really the top four, the patient is in for trouble. If a patient has an “incurable” chronic condition, opts to forego palliatives, and does not consult a doctor with reference to this condition, this condition drops off the record. Nevertheless the chronic condition, or disability, may limit… Read more »

patient x
Guest
patient x

Sherry: Thank you for your long and articulate response to my post. I will take some time to digest it!

patient x
Guest
patient x

“in my own situation, although I have a family doctor, I cannot get free telephonic or online care at night or the weekends.” If your physician doesn’t provide telephone coverage outside of office hours, he’s not meeting the generally accepted standard of care. Get a new doc. “More generally, there ARE places in the country where family physicians can get paid for online visits. As a matter of fact, most health plans will now pay for these visits.” Wrong. NONE of the plans with which I have contracted pay for on-line care. “Get with it!” Please don’t tell me to… Read more »

David C. Kibbe, MD MBA
Guest
David C. Kibbe, MD MBA

Dear Judy Feder: I find your story about the Her2 test and associated treatments fascinating on several levels. Primarily, however, I dig your point about the “catch 22” that keeps patients cut off and in the dark, because there’s a lack of good information, which then decreases the possibility for better information being shared, and so on…. This is why we need to engage patients/consumers/citizens in not only their own, individual care, but in the care decisions that are made for populations of patients. We can’t always wait for the results of hugely expensive clinical trials, which in part justify… Read more »

David C. Kibbe, MD MBA
Guest
David C. Kibbe, MD MBA

First, let me thank all of the commenters for their thoughtful comments. Where to start? Ok, patient x suggests that I simply call my family doctor, and I’ll get all the information I need, for free. I think there’s some irony and sarcasm in that response, because he/she is a family doctor, and knows that providing these services for free is a problem for the economy of small medical practices. Here’s my response: in my own situation, although I have a family doctor, I cannot get free telephonic or online care at night or the weekends. Basically, I get no… Read more »

Randall Oates, M.D.
Guest

Around the year 2000, a survey of the AAFP membership revealed that the costs for a simple HL7 interface averaged $14,000. I am confident a repeat survey in 2009 would be about the same. The lack of AFFORDABLE interoperability is an obstacle that has yet to be addressed in any meaningful fashion. The road maps to interoperability being advocated by the industry and government do not appear to offer any reasonable paths to ensure that interoperability is AFFORDABLE for a majority.
I would love to hear of any efforts that promise to ensure that interoperability will be AFFORDABLE, even if possible.

Gary Wolf
Guest

Thank you for this interesting discussion – some of the best thinking has been in the comments. One interesting angle on “bringing patients in” is that patients are coming in on their own accord, like it or not, which means that the winning EHR solution will ultimately be the one patients adopt for their own care. This is where the most important innovation is; more importantly, it is where the genuine social pressure lies. The most likely winner among electronic record-keeping tools for patients are the tools that are already being adopted by e-patients: open web based solutions that skimp… Read more »

Wendell Murray
Guest

The funds will be wasted in the sense that almost entire amount will flow through to major software vendors – has anyone seen the commercials for GE’s push to capture as much of those billions as possible? – with much too little to show for the expenditure in regard to improved operations in either facilities (hospitals) or physicians’ practices. Anyone with any experience in system implementation or anyone who has even peripheral experience with the behavior of physicians or hospital executives knows that. My preference as citizen is that the funds be put into trust, i.e. invested in Treasury securities,… Read more »