Patient Generated Health Data: With Great Power Comes Great Responsibility

The HITSC Meaningful Use Workgroup, The Joint Commission and the ONC have been busy working on one of the most important recommendations in any of the Meaningful Use Stages — a recommendation that has the potential to change the dynamics of healthcare delivery. The recommendation is MU Stage 3 PGHD 204(B), or Patient Generated Health Data, under Subgroup 2, Engaging Patients and Families.

Why do I think this is the most important initiative in all stages of Meaningful Use? Because if this becomes a final rule, for the first time patients would be recognized as active members of their care team. This rule would incentivize the incorporation of documentation generated and controlled by the patient, into their Electronic Medical Record, residing side-by-side with Clinically Generated Health Data (CGHD), comprising what you and I have known up until this point as PHI. This recognition would give patients status in their care.

Up to this point, the Stage 1 and 2 Final Rules have been focused solely on the roles of individuals whose data goes into the Legal Medical Record, i.e., the clinicians caring for the patient. The rules instruct care providers on how to care for patients, how and what to document, and how and when to share that information (data) with others practicing medicine on the patient. PGHD officially recognizes patients as an active participant by giving them the opportunity to participate in the generation, the recording, and the release of their clinical data.

responsibilityThis means we – patients – will have our data incorporated into our medical chart to be viewed by our caregivers. That is an extremely powerful statement.

The MU Stage 3 Workgroup highlights two main differences between PGHD and CGHD. They are: 1) patients, not providers, are primarily responsible for capturing or recording these data, and 2) patients direct the sharing or distributing of these data to healthcare providers and other stakeholders.

The first point raises the question: Who will tell the patients which data to capture and when and how to record it?

That job is done today by the physician order to the treating nurse or the therapist. Will giving patients the privilege to capture and record their own health data, and have it incorporated into the EMR, be the first step to a future where patients are responsible (and held accountable through the documentation) for carrying out and documenting their physician’s orders? Will patients be penalized for failing their responsibility?

The second point begs the question: If the patient has control of data written back into the EMR and, more importantly, which data are not incorporated, how can a care provider rely on the data for decision-making? How do you address the patient who withholds observations or documentation because they deem it to be unflattering to themselves, to their children, or to their parents?

I have worked in clinical hospital information systems since 1993; from Patient Transport to the ED, up through the ORs and anesthesia, through critical care, acute and ambulatory. I started with Siemens OAS Gold, then Meditech C/S and now Epic. I mention those facts because of all of the previous technology changes in our systems, either driven by innovation or policy, I’ve never seen an initiative with the potential to change medicine like the proposal of PGHD in the MU Stage 3.

I will be writing about the dimensions of PGHD and what they mean for the current health IT ecosystem: including interfaces, devices, wearables, mobile, EMRs and us. The people who work in health IT and run the EHRs and whose experience to data with PGHD is a free-text field labeled, “Chief Complaint.”

John Dzivak

John is a systems analyst at Children’s Medical Center of Dallas with over 20 years of experience with clinical application systems inside hospitals, the last 12 in leading pediatric facilities. Currently, John is leveraging his experience to identify and design innovative and effective uses for social collaboration technology in the clinical environment by applying the principals of Christensen’s Jobs-To-Be-Done and Disruptive Innovation theories.

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