SPM’s comments on important proposed CMS interoperability rules


This is the first of two posts from the Society of Participatory Medicine about an important policy issue regarding portability of our medical records. The second part will be published tomorrow and is written by Michael Millenson, who did the lion’s share of this work, as noted below.

Our Society’s Advocacy and Policy chair Vera Rulon @VRulon has submitted our comments on the proposed rules that have been discussed at great length on social media.

These regulations are a big deal for participatory medicine – they’re the successor to the Meaningful Use rules that have governed patient access to their chart, among other things. The regulations do this by altering how a hospital gets paid based on how well their data moves out of their computers. We want this; we believe it is essential in enabling patients and families to achieve the best possible care. (More on this in Millenson’s companion post.)

Not surprisingly, some hospitals don’t like new rules that affect how they get paid, and have lobbied heavily to NOT be required to give us our data. Some observers say there are ulterior motives – for instance see these 30 seconds of Yale cardiologist Harlan Krumholz at Connected Health 2016, on how a health system CEO told him flat out:

“You don’t understand – why would we want to make it easy for people to get their health data? … We want to keep the patients with us.“

We must fight back – it’s our health, your health. SPM is one of the most consistent voices in Washington for full patient access. The Institute of Medicine said in 2012 that patient-clinician partnerships are a key to “best care at lower cost” – and as Dr. Danny Sands says, “How can patients participate if they can’t see what I see?”

Download the PDF of our comments here (163k). In a cover note to the board’s executive committee, Vera wrote:

Michael Millenson did the lion’s share of the work and significant input was provided by David Harlow, Richard Gibson, Lygeia Ricciardi, along with Mike Robkin, Nancy Finn, Susan Woods, and me [Vera]. The focus is specifically on patient access to the personal health information sections.

  • SPM support to require the 2015 CEHRT edition for the CY2019 reporting period that this will “support increased patient access to their health information through email transmission” and “provide patient’s control of their health data to inform the decisions that they make regarding their health” through improved interoperability.
  • Support renaming the “Provide Patient Access Measure” the “Provide Patients Electronic Access to Their Health Information” Measure & modifying the requirements.
  • Express urgency to create a standard definition of what constitutes a consumer-centric and complete electronic healthcare record.
  • Define what constitutes “timely access” and “reasonable fee” for access to electronic information.
  • Opposition to eliminating four CEHRT measures: Patient-Specific Education; Secure Messaging; View, Download or Transmit; and Patient-Generated Health Data.
  • Change meaningful use CEHRT requirements from just one patient electronically accessing their data to 10% of an organization’s eligible population.
  • Strong support to the targeted use of conditions for participation, conditions for coverage, and requests for proposals as tools to ensure a patients right/ability to electronically access his or her health information without undue burden.
  • Recommendation that to advance the MyHealthEData initiative for patients CMS should 1) maximize the power of existing programs, and 2) practice targeted outreach.

e-patient Dave deBronkart is a cancer survivor, noted for his activist work in promoting access to health care data. This piece was first published at the Society for Participatory Medicine.

1 reply »

  1. But, you have to recall also the dozens of places where you do not want your health information to go. E.g. your potential future employer if you have back pain or hypertension; your spouse if you’ve had an early therapeutic abortion of a child (not his); a firm selling your information to advertisers or a myriad of other users.

    Because it is almost impossible to write into regulations all these no no’s and yes yes’s, it is probably better to decide, once and for all, that the patient owns all of her health data…period. No one can use it without her approval, even for billing. This ends the problem.

    She, the patient, orders to whom the information goes. And it must go fast and securely. And there is a tort committed and a liability incurred if her orders are not accomplished.