An Open Letter (4) to the New National Coordinator for Health IT: Bringing Patients Into the Health IT Conversation About "Meaningful Use"

DAVID C. KIBBE and BRIAN KLEPPER

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This is a policy that is tied unnecessarily to an outdated vision.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."