Now Reading: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded”

I’m not that smart and my ideas are not that unique.

This is why I enjoy writing the posts that are tagged “where we came from” on this blog.

The title of this one comes from a 1991 article published in the British Medical Journal about the idea of providing patients access to their complete medical record. To really dig deep, though, I wanted to grab the seminal 1973 article from The New England Journal of Medicine on this topic, and thanks to the Internet, I found it.

In Sounding board. Giving the patient his medical record: a proposal to improve the system (There appears to be a PDF of this article on the Internet here), authors Shenkin and Warner lay out some facts about the health system that don’t seem to different than those of today, sadly:

Dissatisfaction with the functioning of the medical care-system has become widespread. Four serious problems are maintaining high quality of care, establishing mutually satisfactory physician-patient relations, ensuring continuity and avoiding excessive bureaucracy.

Some differences were apparent in 1973, such as the fact that in 41 states, patients could only obtain their medical records through litigation (!). Also, it appears with the emergence of “centralized organization” though things like health maintenance organizations, that physician autonomy was under siege. The health system was considered at the time to be “decentralized to the penultimate step – the physician” and the fear was that their autonomy was “unchecked.”

All of that aside, the authors, quite visionary in my opinion, laid out an almost Web 2.0 version of the medical world.

They talked about the idea of “decentralized medical review.” A few quotes:

The freely available record would provide a more “longitudinal” view of a patient, and physicians would appreciate better (and treat better) the course of a disease. Since innovation proceeds mainly by the contagion effect, new knowledge would probably be put into practice more swiftly.

And this one

Decentralized peer review would provide recognition of excellence in the practice of medicine, and hence enhance the prestige of being a practicing physician. Patient records and the care that they reflected would become a source of pride open to the perusal of fellow professionals. The expected improvement in continuity would decrease frustrations, and improved physician-patient relations would add importantly to physician satisfaction.

Whoa. They are talking wisdom of crowds, viral innovation, and building trust through transparency. In 1973.

Flash forward to 1991. In The Right to Know, author McLaren discusses data from Denmark, which provided patients “statutory rights” to their entire hospital record, with no ill effects. He concludes:

The argument against giving patients greater access to their records has been lost; the challenge now is to get doctors skilled in writing records that their patients will find useful.

Whoa. He’s talking Meaningful Use.

1973 was before my medical time, but 1991 wasn’t. In 1991 I was in medical school, and I’m pretty sure if you asked me, “Ted, should your patients see what you wrote about them in that manila folder thing with paper?” I would have said, “Why shouldn’t they?”

Ironically, it’s probably the very group that opposed these viewpoints that are responsible for creating mine. Summer of 1991 was my first (and I think just one of 2) trips to the national meeting of the American Medical Association, in Chicago. That meeting was marked by protests from the HIV/AIDS community on the outside. And on the inside, after a week, I remember leaving with the thoughts, “I met a lot of great peers here, but who are these leaders who are resistant to technology and only allow heterosexual men to participate?* They aren’t me. And I’m not them.” This is the heritage of Generation X – we were groomed to be on the side of the patients.

So that’s my story, and the story of where we came from with regard to sharing medical records with patients. Has nothing happened in 18 years? Absolutely not.

  • The largest medical groups in the United States regularly share medical records with patients, online
  • Most patients have a “statutory right” to their hospital record, albeit, not in the most friendly or useful way (see this example from Tufts University)
  • Crowdsourcing, trustbuilding, and transparency are sweeping the business world. Health care is on the verge.
  • Generation X are the attending physicians and medical directors, Generation Y are graduating from their residencies.

In the Shenkin article, it was proposed that a law be passed to require that a “complete and unexpurgated copy of all medical records, both inpatient and outpatient, be issued routinely and automatically to patients as soon as the services provided are received.” They do a great job of covering every known objection, “firstly” through “ninthly.”

My favorite is of the fear of “poor quality review” by peers and patients. They said that in 1973, it is “safer for them (physicians) to measure adequacy by academic degrees achieved than by competence demonstrated.”

The great thing I have learned pretty solidly from so many people by 2009 is that the medical community has so much support from patients and families – they want them to be great, they will only help. One patient said this at a recent continuing education course to room of us: “Can I just say thank you for paying attention in medical school, you are in my thoughts, you have my full gratitude.”

Let’s please remember these words to keep the conversation about ending secrecy an easy one, not a hard one. And, carry these two articles in our back pockets at all times.

*The American Medical Association has since reversed its stance on discriminating against gay, lesbian, bisexual, and transgender physicians and patients.


Similar Posts:

16 thoughts on “Now Reading: “Concern that sharing information with patients may cause sustained psychological distress is probably unfounded””

  1. The right of patients to have full access to their own medical files may explain why many specialists' letters back to the family doc often start: "Mrs. Smith is a delightful 65-year-old woman…" All patients are "delightful" when you have in the back of your mind that the patient might be reading this report some day. But patients' right to know has also expanded to a 'need to know' by doing their own research about their medical condition and treatment, often online – the so-called 'Medical Googler'.

    Dr. Stuart Foxman of the College of Physicians and Surgeons of Ontario implied as much in his blog for physicians called DocTalk. He wrote about the growing phenomenon of patients who are these self-educated "Medical Googlers". He quotes one study which found that many physicians rate the know-it-all Googler as somewhere between “frustrating” and “irritating”.

    The study noted a number of doctors’ concerns. Some patients used the information gleaned on their own for self-diagnosis or self-treatment. Some doctors believed that the information caused the patient unnecessary confusion and distress. “All of these seem like legitimate concerns on the part of physicians,” explains Dr. Foxman.

    But the doctors surveyed in this study expressed other concerns, too. “The highly curious and informed patients were sometimes perceived as ‘challenging’ with a tendency to test the knowledge of physicians,” he reports. “Some doctors felt that these patients were overly assertive, undermined their authority, and did not show sufficient trust in their health care provider.”

    Dr. Scott Haig’s November 07 Time magazine essay called ‘When The Patient Is A Googler’ is a scathingly arrogant attack, describing his Googling patients as “suspicious and distrustful, their pressured sentences bursting with misused, mispronounced words and half-baked ideas.”

    Some patients, Dr. Haig writes, “don’t want to know what’s wrong with them, what medicines they’re taking, or even what kind of operation you’re planning to do on them. “Just get me better, Doc,’ is all they say.”

    He sounds like just the kind of physician who'd fight against the right of his patients to have access to their complete medical record.

    More at: http://myheartsisters.org/2009/08/19/med-google/

  2. Dear Carolyn,

    Thanks for adding your experience to this post and the link back to your work, and very well stated about the impact of knowing that someone will see your work, just as the authors in the papers above,

    Ted

Leave a Reply