Will data liberation help patients feel better? A view from Washington D.C.

Yannis Valtis, MD

Resident in Internal Medicine and Pediatrics

Brigham and Women’s Hospital

PGY 2

02/12/2020

Yannis Valtis, MD

Over the past weekend, I attended the National Health Policy Conference organized by Academy Health in Washington D.C. Two main themes kept coming up in keynotes, plenaries, and side conversations among attendees: 1) the importance of data liberation and, 2) the need to focus on the patient experience of healthcare delivery.

Data liberation can refer to facilitating patient access to their own medical records, provider access to records from other systems, or public transparency around quality and price for different healthcare services and providers. Patient advocates, health systems leaders, policy makers, researchers, and government officials champion it broadly. While it is clear to me how a young millennial patient who grew up in the age of the Internet would make use of such data availability, the picture is less clear when it comes to elderly medically complex patients.

The second theme that permeated discussions was that most patients rate most of their interactions with the healthcare system poorly. One CEO commented during a plenary – “most health care systems have net promoter scores of zero.” (The net promoter score is calculated from the proportion of people who are very likely to recommend a service to a friend.) This idea was alarming to me – if people already find interacting with the healthcare system mostly frustrating, will data liberation help or exacerbate this? I think the answer depends on how we as healthcare providers respond to increasing data transparency.

When I think of my complex elderly patients in primary care clinic, I doubt that access to raw medical record data or long spreadsheets with price lists across different health systems will make their experience of getting care much better. PCPs, however, have a unique role in shaping this experience and can use increased data transparency to empower their patients to make better choices. A PCP will, for example, be able to take price into account when recommending a specific imaging procedure or specialist consultation. As with most policy interventions in healthcare, the buy-in and commitment of frontline clinicians will be critical to the success of data liberation.