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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.

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20 Responses for “Will Regina Holliday Become Health Care’s Rosa Parks?”

  1. Michael, Thank you for writing an insightful, thoughtful piece. Regina is a Hero. What’s up with not giving us patients our medical info? Cognitive dissonance, anyone?

    • e-Patient Dave says:

      Especially, what’s with the American Hospital Association, which will soon be penalized for people who end up back in the hospital within 30 days?? What are they thinking when they advocate not giving us our records to try to succeed at home??

  2. JefferyG says:

    All you have to do is get your care at Kaiser – they give patients access to their records.. I think one of Regina’s said that she does in fact belong to Kaiser now?

    Shop with your feet instead of asking govt to mandate something if you want real change.

    • Dear Jeffery,

      Yes, I went to KP after my husband died. If I go to get a check up I have limited data access. Even in KP you do not get doctor’s progress notes or nurses progress notes.

      But if I go to the hospital, it would be a KP approved facility not a KP facility. The Meaningful Use Stage One regulations would be my only only legal recourse to get access to my records in a more timely fashion than 21 days.

      Meaningful Use Stage One gives us access within 4 days. As we comment on stage 2, many of us are asking for access within 24 hours. If it is in our record we should be able to read it. There are so many ways we could aid in the care model with access to that information.

      As far as voting with one’s feet, that is a mighty long walk for most of America. KP has a strong presence on the West Coast, but elsewhere their coverage is sparse.

      If I apply Michael’s analogy to your statement it would be, “Why didn’t Rosa Park just move New York where she could sit on any seat in any bus?”

      Sometimes we need laws to support us in our attempt to treat our fellow man with dignity and respect wherever they live in our fair country.

      -Regina Holliday

  3. e-Patient Dave says:

    Brilliantly said, Regina. You have evolved in these three years into a highly informed, sharp-reasoning spokesperson for this movement.

    Your response re Rosa Parks moving to N.Y. is right on the money.

  4. Bravo, Regina!

    The secret about Kaiser, by the way, is that their physicians were trained exactly the same way as every other physician, and the rank-and-file often has the same cultural attitude towards patients as every other doctor. Doesn’t mean that paternalism isn’t well-intended, but it also doesn’t mean it’s not paternalism.

  5. Peter1 says:

    Lip service to access is always pinned to the charge to get it. If the 73 cents is anything like every other hospital charge then I’ll bet it’s 500% over billing taken from the charge master. Electronic records don’t bear the cost of paper copies or storage.

  6. Regina’s work is remarkable! She is fighting he worst form of corporate overreach. It is beyond disgusting! The AHA is even worst than the scientific publishers.

    Has anyone asked all the Board members & the 10 highest executives of the AHA if they would accept waiting for 30 days for the most current health record of their wife/husband/loved one, when their loved one was diagnosed with a potentially deadly condition and they had to decide rapidly on a course of treatment.

    How many do you think would accept such a absurd limitation in our elementary rights to have all the tools needed to make an informed decision regarding the life of a human being?

    Organizations like AHA who always put income/ease of doing business before saving lives do not belong to the 21st century where the Network effect will eventually block their efforts to keep the control they should have had in the first place.

    I mentioned the scientific publishers earlier for a reason. There are similar ownership issues of the data used to generate their products. Look at http://www.thecostofknowledge.com. We should build a similar site against the likes of the AHA.

  7. SJ Motew, MD says:

    In addition to being the right thing to do, patients with access to their records only helps to solidify the joint contract toward improved care. As a physician I would gladly offer immediate access, however I am confused as to what I need to do to conform to privacy issues ala HIPAA. I can’t email or text, and indeed if I use any of the multitude of electronic methods for transfer there must be layers upon layers of security/encryption etc. I am responsible for holding onto the records indefinitely (at a cost).

    I strongly favor immediate ownership for patients and their records, I am just not sure who to take the fight to.

  8. Calcification isn’t only inherent in organic systems. It’s also prevalent in human institutions, which goes a long way toward explaining the paternalism within the healthcare systems.

    Poor patients. They don’t understand medicine. We’ll let them know when there’s something they need to know.

    The only path toward de-calcification is exactly what Regina and the e-patient movement is all about: creating a two-way collaborative relationship between healthcare and its customers – a/k/a patients – that will drive better health for both sides.

    To accomplish that, we’ll have to take advantage of every teachable moment. Patients need to educate healthcare on how to collaborate with us.

    Dr. Motew’s confusion (indicated above) makes it clear we can’t trust the policy wonks to come up with rules that make collaboration possible. So the policy wonks need to listen to patients, too.

    Onward.

  9. Thank you for this great post and to Regina for the remarkable ways that she breaks down barriers through the use of not only her artist’s brush but with the written and spoken word.

    I truly believe that transparency is and will continue to be the most powerful tool we have to getting to safer, high-quality, patient-centered care.

    Whether it’s transparency with our medical records, patient care outcomes, research, or costs…..it levels the playing field by giving consumers/patients what they need most: information and knowledge.

    This is how to empower patients. This is what will drive improvement from the outside-in. This is what will give patients the power they deserve to be captain of their own health care team (credit and thanks to Mary Brennan- Taylor for the analogy).

  10. platon20 says:

    While its true that “collaborative” decision making between doctors and patients can work, it is NOT necessarily ideal in all situations.

    Consider teh following scenario:

    75 y/o husband and wife come for a follow-up exam, the husband had a recent biopsy showing grade 3 lymphoma. Here’s what happens under a “collaborative” model:

    Doctor: we have chemo protocols A, B, C, and D which are successful in X, Y, Z% of patients with side effects #1-#10. Or we can do a combination of radiation + chemo which comes in 5 different flavors, is successful in X, Y,Z% of cases with side effects #11-#20. Oh by the way, we also have to define what ‘successful’ means, so lets talk about 5 year survival rates, 5 year morbidity rates, etc. Here’s your menu of options, here’s a stack of paperwork to read, you guys think it over for a few days and then let me know which option you want to pick.

    I submit to you that’s not ideal for every clinical encounter.

    Sometimes patients do better in the “paternal” model where you say “there are a lot of options out there, but in my professional medical opinion the best option is X, for these reasons.”

  11. I agree completely that “participation” should not be forced on everyone. I have an elderly father who, at age 50, would have been quite participatory. Not quite so desirous of that at age 90.

    What we need, however, is the opportunity for patients to decide just how participatory they want to be — a lot, a little, not at all. Giving you your medical records after 30 days makes the decision for you. Working in partnership with your physician and respecting his/her clinical experience is great. In some cases, there needs to be a bit of work for that respect to go in both directions.

    • e-Patient Dave says:

      > the opportunity for patients to decide just how participatory they want to be

      And I think the whole point here is that it’s outdated for clinicians to be making that decision.

      Years ago the domain of Shared Decision Making acquired research showing that doctors don’t do a reliable job of estimating what treatment their patients would choose if fully informed. Years later, this winter the Open Notes project documented that in the baseline survey at start of the project, physicians were waaaay off in estimating what their patients would want re their records …. docs mostly said patients wouldn’t want the info, and patients actually were 90% for it.

      It doesn’t matter why this is. I just know, for heaven’s sake, let’s improve healthcare by (for one thing) asking patients what THEY think is important.

  12. Michael, you wrote “participation should not be forced on everyone”. May I suggest that it is even truer that “non-participation should not be forced on anyone”.

    A non-paternalistic healthcare system naturally accepts that patient-centered medicine really means that the patient is at the center of it all, (including in shared decision making). In such a system, how much participation is acceptable becomes a moot point. The patient decides. This system accepts active participation as default and can easily scale back to ANY mix of participation and non-participation.

    The reverse system, the old paternalistic model that refuses to go away, obviously lacks the flexibility to fully accept and integrate active engagement of the patient as main decision maker. That’s why so many wrong decisions are made at every level of the system. Until the “Industrial Age” medical system is replaced by the one generated by “Network Age”, this nation will not be able to get a handle of runaway medical costs.

    • e-Patient Dave says:

      @Gilles,

      > non-participation should not be forced on anyone

      Brilliantly said. That’s a “forever” quotable.

  13. Gilles, of course, I agree. That is why I have been such a strong supporter of Regina and participatory medicine — way back when it was called patient empowerment.

  14. Nice attempt at evading the issue. Perhaps you could explain how alleged “precluding preventative care and aggravating early stages of disease” and “militaristic blindly demurring to our police and military” etc. excuses or even relates to Robinson’s exemplary cruelty. Ah, never mind. For really, when you boil away all the ideological goo and dribble, the truth is that the celebrated Pulitzer Prize-winning columnist behaved in a manner that no decent person can excuse. And to be rudely frank, those who do make excuses for him or attempt to deflect attention from the vileness of what he said are no better than he is.

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