Patient Engagement as a Two-Way Street Part 3 – Recommendations

In my last post, I spoke of the importance of “getting to know” the patient and asserted that knowing a person can’t be accomplished only by predefined questions. I also referred to the HIT Policy Committee and HIT Standards Committee’s request for comment on Patient-Generated Health Data (PGHD) for Meaningful Use Stage 3 (MU3). Four Siemens employees (including me) submitted comments on that blog last week. Here’s my own summary of the comments, stated as recommendations.

• MU3 should define criteria for EHRs to accept PGHD, initially in either unstructured or structured formats. (Note: “PGHD” should include data not only from patient but from their care givers such as family members)
• Encourage, but don’t mandate, structured data content standards. Define a clear roadmap for standards to come, compatible with data standards for EHRs.
• Clearly define provenance (data source) metadata requirements to inform providers so they can exercise their clinical judgment on how to use the data.
• Focus on relevance, being careful not to overwhelm people with too much data. Allow provider access to additional PGHD where needed.
• While in typical cases the patient is authoritative on many issues, the provider needs to exercise judgment as to trustworthiness in each SPECIFIC patient interaction.
• Avoid being overly prescriptive on which data to gather, but rather let patients say what’s most important to them. We “don’t know what we don’t know.”  
• Strive for wide adoption and low barriers to entry by evaluating and embracing a variety of data entry and viewing technologies most commonly used by patients
• Define clear purposes, expectations and responsibilities for the review and use of PGHD

PGHD is not new: much of today’s healthcare depends on it already. Still, in an increasingly mobile, connected, socially networked culture, there’s a lot more potential for providers to get to know patients better by collaborating with them through the two-way exchange of information. MU1 and MU2 are weighted toward a one-way flow of information from EHRs to patients, but the HIT PC and HIT SC are, commendably, seeking ways to turn this exchange into more of a “two-way street” with PGHD.

Patient Engagement as a Two-Way Street Part 2 – “Getting to Know You”

One of the purposes of patient-generated health data (PGHD) is to help providers know their patients better than they would have otherwise if they relied only on data captured by providers. In my experience, I appreciate doctors who do more physical exams and tests but know more about me that could help them personalize their treatment. As Rodgers and Hammerstein wrote in The King and I, “Getting to know you, getting to know all about you…”

So it is with PGHD. How can it help providers know us better? I worked with colleagues to write a detailed response, which you can find as a comment on the HIT Policy Committee and HIT Standards Committee's blog requesting input on PGHD. I’ll give some highlights in my next installment. The rest of today’s post, while alluding to that response, is my own opinion.

While a patient-provider relationship is special and not necessarily deeply personal, think about how people get to know each other in general. They talk! In ways that can’t be predefined, prescribed, or pigeonholed. Sure there are facts such as your birthday or address. But the vast majority of emotion, experience, and aspirations are richly expressed through natural language. Would you want to get to know someone by filling out structured forms with multiple-choice questions?! So in response to the blog question “does all PGHD for care management need to be in a structured form?” I’d answer a resounding “no!”  As one working in healthcare standards, I understand and fully support the need for structured data in EHRs, for interoperability, analytics, decision support, quality measures, etc. But even if we could magically get all PGHD structured, standardized, tagged, and automatically imported into EHRs, that wouldn’t necessarily make things great. Structured data has precision, but very little nuance. Very few patients think or communicate via structure, and no amount of standards or government regulation will turn patients into health informaticists.

So I suggest crawling before we walk or run when it comes to PGHD. Let’s lower the barrier to entry by embracing PGHD in whatever formats or devices (PCs, smart phones, basic phones with text messaging, etc.) the patients can create it. Yes, there should be a direction for standards so that appropriate data (such as med lists or glucose levels) can flow from patient-facing systems like PHRs into EHRs and be understood. But let patients express themselves in their own words and preserve this in their health record. And speak to them in plain language that they understand (which won’t be structured XML). Then we’ll have the kind of two-way street that will help my providers “get to know me” and deliver the kind of healthcare relationship that I want for myself and my family.

Patient Engagement Needs to be a Two-Way Street

The “patient and family engagement” objectives within the federal Meaningful Use (MU) incentive program Stages 1 and (proposed) Stage 2 have been well-intended steps forward. But they have mostly regarded patients as receivers of information (education materials, clinical summaries after each visit, view/download/transmit their information, receive patient reminders). This is pretty much a “one way street.”  Sure, there is “secure messaging” where a patient can send essentially an email to a provider. But most requirements assume that providers control the keys to information that they (figuratively) “dispense” to the patient.

I recently read a fascinating book called “Cognitive Surplus: Creativity and Generosity in a Connected Age” by Clay Shirky, whose premise is that the digital age offers “thrilling changes” as society is transformed from a passive consumer culture (e.g., watching TV/movies and reading publications, all controlled by large media companies), to a more networked culture where technology enables people to create, publish, share, connect, and collaborate in innovative ways, without dependence on established authorities. While the “free for all” can produce huge volumes of frivolous or low-quality content, it can also engender truly original and breakthrough ideas, which otherwise would not have happened, by relying on the goodwill and “cognitive surplus” (hitherto untapped creative energies) of millions of people. Examples include Wikipedia, kiva (microfinancing to help individuals start small businesses and alleviate poverty) and Grobanites for Charity fans of a singer who banded together to help charitable causes in places such as Africa. Shirky’s cognitive surplus thesis has strong parallels to the Health 2.0 movement and patient engagement. How can patients be full partners and contributors to their health information and their health, rather than merely passive consumers whose information is controlled by providers? Or, to use a music analogy as I like to do, is the patient just listening to solo performances by each provider, or are they playing harmoniously as an ensemble?

Patients are partial contributors already. After all, didn’t lots of the patient’s history and information about symptoms, contraindications, outcomes, and treatment that’s in paper charts or EHRs come from patients and their families, through interviews, assessments, and clipboards? Who knows better than patients what they are really doing (not what someone else thinks they ought to be doing)? So it’s good that there has been recent testimony and requests for public comment from the HIT Policy and Standards Committees about patient-generated health data (PGHD). If you have any interest in this subject (and, as a patient, you should), you can respond too. There’s no stated deadline, though commenting sooner rather than later you’d be more likely to be heard.

Admittedly, it’s easier when discussing EHR certification and MU to discuss outputs from the provider’s EHR to patients, because those are easier to understand, quantify, and control (from a provider’s or EHR vendor’s perspective). When accepting information from patients, things are much more unpredictable. The request for comment asks 10 good questions, such as how “structured” PGHD should be, where are patients “the authoritative source,” and what degree of incorporating PGHD into EHRs should be expected of providers.

I have many thoughts on these questions. More to come next week…