Patient Engagement Distracts the Health Care Field From Reform (Part 2 of 2)

Posted on January 12, 2016 I Written By

Andy Oram is an editor at O'Reilly Media, a highly respected book publisher and technology information provider. An employee of the company since 1992, Andy currently specializes in open source, software engineering, and health IT, but his editorial output has ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. His articles have appeared often on EMR & EHR and other blogs in the health IT space. Andy also writes often for O'Reilly's Radar site ( and other publications on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM, and DebConf.

The previous segment of this article looked at the movement for patient engagement, or the patient experience. Now I’ll highlight a true reform in the health care system.

Patients Left Out in the Cold
What activist patients and doctors have been demanding for years is not engagement or a better experience, but a central role for the patient in choosing treatment and carrying it out when they leave the doctor’s office. Patient empowerment is the key to all the things doctors profess to care about, such as preventing readmissions. It’s even more critical with chronic diseases that have a lifestyle component, such as congestive heart failure and diabetes.

Some patients come to the clinical setting endowed with more education than others, or a personality suited to pushing back and demanding rights. But some fight for years for such basics as access to their records. I was dejected to read just a few weeks ago of an attempt to improve care in Rhode Island, endorsed no less by the American College of Physicians, that boasts about giving access to everybody except the patient to health records.

The American College of Physicians is concerned about the hypothetical patient who “doesn’t know the name of the peach-colored pill that the orthopedist prescribed.” That particular patient is clearly not asking for empowerment. But millions do keep track of their medications and deserve equal knowledge about the rest of the information about their medical condition. If the peach-colored pill had been recorded in a patient health record, accessible to the patient (or a responsible care-giver) wherever she goes, all the complex Health Information Exchange infrastructure praised in the article could go by the wayside. Another article describes an emerging PHR solution.

Another recent example of the disdain for patients comes in a complaint by AHIMA about the difficulties of matching records for a single patient. Duplicate records are undeniably a serious problem (as is information mistakenly entered in a different person’s record). But instead of recognizing the obvious solution of a PHR, all they can come up with is a universal identifier (which is a privacy risk as well as a target for security attacks) and more determined efforts to match patients the old-fashioned way.

Empowered patients have control over their own information. Doctors guide them to make reasonable choices that affect their health, which includes sharing those records. Empowered patients set their own goals and timetables. A grant of power and information to patients will inevitably empower and inform the other health professionals with whom those patients interact, leading to a learning health system and a true team approach to care.

What’s the difference?
As I eventually admitted, the movement for patient engagement offers many good ideas that can contribute not only to a better experience in the health care center but to patient empowerment and better outcomes. What I complain about is the motive behind patient engagement.

Let’s take patient portals. To proponents of patient engagement, it serves a few purposes related to public relations. The portal hopefully:

  • Indulges people’s preference for fast information, endearing them to the practice

  • Keeps them more “engaged,” meaning that they’ll come back and spend more money at the health care center.

  • Delivers information in more appealing ways (such as through video, when practices use it).

  • Takes routine tasks off the shoulders of staff, freeing them to do other things that improve the patient experience.

This poverty of vision is why most portals lack useful information that patients can use to actually improve their care. Discharge instructions are usually a crumpled page. Doctor notes are hidden away, available to malicious attackers more easily than to patients. Medical codes and raw numbers appear on the portal without further elucidation.

Modern health facilities use web sites along with text messaging, old-fashioned phone calls, and other tools as part of a strategy to keep patients on their treatment plans. They may have full discharge instructions, along with instructional videos for such important tasks as changing bandages, on a patient’s personal site. The patient is encouraged to report her progress along with any setbacks, and gets quick feedback when there is a change. Many face-to-face visits can be averted, and patients who can update their caretakers without leaving home are less likely to exhaust themselves at vulnerable times. The patient’s family members can easily keep up with changes and find out what they need to do, as can other professionals working on the case.

For every element of empowerment, there is a tawdry alternative that can be offered as “engagement.” That’s the risk in the patient experience movement. Unless the health care institutions start out with the philosophy of empowerment, it’s just another distraction from the work we need to do.