The protest organized by Regina Holliday over a patient’s right to access their medical information is not quite the same magnitude as agitating for integration in 1950s-era Alabama. Yet there are intriguing similarities between the crusade Rosa Parks launched then and what Holliday is attempting today. Both involve a refusal to accept second-class status and a resolve to push back against entrenched institutions.
Parks’ story is well known. Her refusal to surrender her seat to a white male passenger on a Montgomery city bus in December, 1955, prompted her arrest and a sustained bus boycott by outraged black residents. That boycott’s success propelled a young Martin Luther King, Jr. to the forefront of the fight against segregation. Parks eventually came to be known as the “mother of the modern day civil rights movement.”
Holliday’s protest is seeking media attention – as this is written, it had not taken place – by targeting the American Hospital Association’s annual meeting at a Washington hotel. The rights issue involves how quickly patients are able to see their own electronic medical information after leaving the hospital. The AHA, representing an industry that grew up as “the physician’s workshop,” wants a 30-day grace period to give doctors more time to prepare and review material. Holliday demands immediate access.
What makes this a fight about freedom, and not just fodder for the Federal Register, is its profound potential to affect how each of us takes responsibility for our own health and health care in the digital information age. What is most likely to capture the general public’s interest, however, is the way that general principle finds emotional resonance in Holliday’s personal story.
A widow with two young children, Holliday recalls on her blog how her husband, Fred, died “painfully [from cancer] after suffering for weeks.” She blames inadequate pain management and uncoordinated care due to a chaotic medical record. When they sought access to his electronic medical record, the hospital responded by saying “we must wait 21 days and pay 73 cents per page to see the story of his care. Then they told us we could go home to die.
Just as Rosa Parks was not a random bus passenger – she and her husband, Raymond, were active members of the NAACP – Holliday is not a random patient protester. An artist, she responded to Fred’s death by becoming a “patients right arts advocate,” producing paintings with titles like “73 Cents,” and “Hubris Hospital” and “Give Us Our Damned Data.”
Also like Parks, Holliday is part of a larger community that shares a similar outrage over being relegated to the back seat, even if in the doctor- and hospital-dominated world of health care, the “back of the bus” is symbolic rather than literal. Her protest drew expressions of support from the National Partnership for Women & Families, the Center for Democracy and Technology and others. But the key to whether this protest is a turning point may lie in a phrase used in a letter supporting immediate access from the Society for Participatory Medicine, to which Holliday belongs. (Disclosure: I’m a Society board member and a friend of Holliday’s, but did not draft the comments.)
The Society wrote: “The overarching principle with respect to patient access to electronic health record data…should be: ‘Nothing about me, without me.’”
That phrase comes from a health care conference held in Salzburg, Austria in the late 1990s. It echoes the slogan, “Nothing about us without us” popularized by disability activists in South Africa and then adopted by activists in this country. It is a powerful statement about equality, engagement and control of one’s own destiny even when those who do not want to share control do so with the best of intentions, whether seeking to help the disabled or trying to implement electronic medical records in hospitals.
The problem, as The Silent World of Doctor and Patient defined it so insightfully more than a quarter-century ago, is that many providers genuinely believe it is their duty to act as “rational agents” on the patient’s behalf without asking the patient’s opinion. In contrast, “nothing about me without me” is the patient’s demand for freedom and, yes, the responsibility that comes with it.
That demand is not unprecedented. I’ve written how new moms were given strict baby feeding schedules by pediatricians until Dr. Benjamin Spock declared that mothers deciding when to feed their babies was “was used by the entire human race until the turn of the century.” How the first American Medical Association code of ethics required patients to obey their doctors, and how it required repeated lawsuits by patients before doctors had to tell patients in clear language the risks as well as benefits of a procedure. And how the AHA, facing the threat of legislation, adopted a Patient Bill of Rights that included such privileges as being told the names of all the doctors treating you.
What distinguishes Holliday’s effort is the power of information access in the digital age. “Give us our damned data” means possessing the raw clinical material that lets us partner with our own doctors or choose other clinicians who better meet our needs. We can go “off the grid,” perhaps “crowdsourcing” questions to others, or we can apply that digitized information to treatment recommendations and outcome prediction algorithms based on the same evidence our doctor uses.
Demanding access to our digitized information immediately, rather than when it is convenient for the doctor and hospital to give it to us, is a stark declaration that it is our health and our lives that are immediately at stake: “Nothing about me without me” from our first cry for food on the day we are born and then every day after.
This dispute may soon be forgotten as a kerfuffle over criteria for “Stage 2 meaningful use” subsidies from the Department of Health and Human Services. But if it can ignite an understanding about what takes for us to be true equals in health and health care decisions, it could be the start of a mass movement that would make Rosa Parks proud.
Michael Millenson is a Highland Park, IL-based consultant, a visiting scholar at the Kellogg School of Management and the author of “Demanding Medical Excellence: Doctors and Accountability in the Information Age.