I’ve just returned from Toronto, where I gave the opening keynote at the Medicine 2.0 Congress. It was titled “Gimme My Damn Data,” which is an unconventional title for an opening address, but I meant it. Here’s why.

A new world of participatory medicine has been growing for years, largely unnoticed. In this new world, healthcare is not a one-way street: empowered patients are engaged in their care, actively collaborating with their physicians, sharing responsibility for their care.

The healthcare providers (doctors, nurses, etc) are still the providers, but the patients share in both the knowledge and the responsibility for how it all turns out.

And, certainly, the decision making.

This requires that patients have access to their medical data. (Whose data is it, anyway?)

As my primary physician Danny Sands, MD MPH, says, “How can patients participate if they can’t see the data?” But in today’s world (America and, I’m told, many other countries), access to our health data is anything but easy.

In the USA the HIPAA act guarantees that we can get it – but it can take months, which is absurd in a crisis. And, law or no law, Deven McGraw of the Center for Democracy and Technology reports that problems with data access are the #5 complaint in the entire Department of Health and Human Services. #3 HIPAA complaint* reported to the Department of Health and Human Services.
* Deven updated this in an email, saying “it’s consistently the third based on this HHS source.”

Clearly, what patients want and are asking for is not an accomplished reality throughout the world today. This is unacceptable. Lives are at stake. I think people – especially sick people – have a right to take their records and seek care elsewhere. (And that’s beyond the basic issue of a person having access to their data on general principle. Imagine if you couldn’t see your banking information!)

Some providers are great about this. My own medical records, which I can read anytime, are on PatientSite at Beth Israel Deaconess. But there’s still no way for me to get all the data out: I can export some information, but not all. And my hospital’s much better than most: most have no way at all to give you your data – except by fax machine.

There are many technical issues to be ironed out, not the least of which is what format the data should be in. I want to participate in projects to make something happen in this area, something all citizens can get their hands on. If you’d like to partner with me on such a project, contact me.

My slides from the talk should be online within a few days. I’m glad to say that my talk was well received, but to a certain extent I was preaching to the choir. We have much work to do.

So yeah, I meant it: give us our data, and I meant it strongly. No kidding: unleash our data!

It’ll take time. Let’s get to work.

Kent Bottles MD

Guest post by Kent Bottles, M.D., President of ICSI.

Preface: The Institute for Clinical Systems Improvement is a Minnesota-based non-profit that “brings together diverse groups to transform the health care system so that it delivers patient-centered and value-driven care.”

Needless to say, I like how they think. (Good taste, too – they invited me to do a 90 minute keynote at their conference, May 3-5, 2010 in St. Paul.)

Anyway, Thursday morning on Twitter, @KentBottles retweeted this:

@ICSIorg: The Ideal Doctor/Patient Relationship:
Can Doctors Ever Know What Will Benefit the Patient?

Son of a gun, he’s writing about a book Patient, Heal Thyself that was the subject of a post here in January. The book takes a controversial position, going to the core of who’s responsible for what in the patient-provider relationship. And that’s at the core of participatory medicine. So we’re cross-posting Kent’s thoughts here.

The subject gave him a headache. You? –ePD

The Ideal Doctor/Patient Relationship:

Can Doctors Ever Know What Will Benefit the Patient

What is the ideal relationship between doctor and patient in 2009 America? In 1927, in a famous essay titled “The Care of the Patient,” Francis Peabody described the personal bond between these two actors as the source of the “greatest satisfaction of the practice of medicine.” (JAMA, 1927, 88: 877). During my medical school days in the late 1970’s at Case Western Reserve in Cleveland, this personal bond was talked about a lot. The other topic emphasized was the need to evolve beyond the traditional the “doctor-is-always-right attitude” that Sherwin B. Nuland describes in a book review published in The New Republic (July 1, 2009).

In response to the paternalistic physician who pushes his values onto the patient, Jay Katz in the 1984 book The Silent World of Doctors and Patients argued that patients should decide between competing treatments because they alone can evaluate the personal issues involved in making such important choices. As one bioethicist put it in 1990, “We must render a patient’s responsibility to the physician unacceptable, and we must insist that patients take primary responsibility for making decisions related to their health care.” (Schneider, CE, The Practice of Autonomy: Patients, Doctors, and Medical Decisions, 1998).

Not all patients want to take on this primary responsibility. The problems associated with them making their own decisions are summarized by this patient:

“When he asked me what I wanted him to do I was very upset. He’s meant to be the expert, isn’t he? How should I be expected to know what’s the best if he doesn’t? I thought it was cruel. I asked him what he would do if it was his wife’s X-ray and test in front of him and he just said that what mattered was what I wanted. I don’t think it’s fair to say that to people like me who don’t know much about illness and operations. In the end, I just asked my daughter who used to be a nurse what I should do.” (Quoted in Schneider, CE, 1998).

Schneider in “The Practice of Autonomy” finds that some patients may want to reasonably give up their right to make their own medical decisions because they feel less competent than their physicians, because they are too exhausted, depressed, irritable, and confused by their illness to think straight, and because they want to be manipulated into a course of action they desire but still resist. He describes patients’ desires as “complex, ambiguous, and ambivalent.” A patient quoted in this important book says, “I needed the doctors to take control so I could use all my energy for recovering.”

The philosophers and the bioethicists write books and attend conferences where they tell medical students that patients should or must decide what medical care they want, that social justice demands that all of us should get the medical care we have a right to, that doctors should put the patient ahead of their own personal interests, and that the doctor should not harm the patient in caring for him or her. But the clinic still must be staffed and the patients must be seen. And in the real worlds of the hospital, nursing home and doctor’s office, patients do not always come in with a well-developed personal belief system that allows them to make all their own medical decisions.

Before his famous trip to McAllen, Texas, Atul Gawande addressed the tension between the advice of the bioethicists and the messy, busy, confusing world of taking care of real patients. Gawande rejects the paternalism of his urologist father where “doctors made the decisions; patients did what they were told.” “My father recounts that, through the seventies and much of the eighties, when men came to see him seeking vasectomies it was accepted that he would judge whether the surgery was not only medically appropriate, but also personally appropriate for them.” Patients “were regarded as children: too fragile and simpleminded to handle the truth, let alone make decisions. And they suffered for it.” (Atul Gawande, Annals of Medicine: Whose Body Is It, Anyway? The New Yorker, October 4, 1999)

Much of Gawande’s article describes the terminal cancer patient Lazaroff who insists on neurosurgery that none of his doctors really thought was appropriate or wise. “Lazaroff, I thought, chose badly. Not, however, because he died so violently and appallingly….I thought Lazaroff chose badly because his choice ran against his deepest interests.” Gawande concludes the article by writing, “As the field grows ever more complex and technological, the real task isn’t to banish paternalism; the real task is to preserve kindness.” (The New Yorker, October 4, 1999).

And now we have Health 2.0 and participatory medicine, empowered patients and social networks, and some patients demanding to make all their decisions and see all their medical records. Robert M. Veatch in “Patient, Heal Thyself: How the ‘New Medicine’ Puts the Patient in Charge” (Oxford University Press, 2008) and Dr. Don Berwick in a recent Health Affairs article make the intellectual case for patients healing themselves.

Berwick has proposed a new definition of patient-centered care as “the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care.” According to Berwick, such a definition should lead to elimination of restrictions on visiting patients in the hospital, patient choice of food and clothing in hospital, patient and family participation in rounds, patient and family input into design of processes and services, patients owning the medical record with clinicians needing to obtain patient permission to see it, and shared-decision making being used universally.

Veatch states that patients alone should be in charge of their medical care and they have no choice but to assume this active role. In Veatch’s ideal world there would be no informed consent and no prescriptions for drugs. Doctors should document the diagnosis and leave it to the patient to talk to the pharmacist about whether they should take the drug and what dose they should try. And Veatch believes that since “physicians generally have no basis for knowing what would benefit their patients” they “must stop trying to make decisions that benefit patients.”

Which brings us back to Sherwin B. Nuland, the retired surgeon and author, who reviewed Veatch’s book for The New Republic (July 1, 2009). Echoing the real patients quoted by Schneider and knowing the real world where Gawande performs surgery, Nuland concludes that “readers are left with a topsy-turvy world, but maybe that was his plan all along. Veatch stands revealed as an agent provocateur of medical ethics. His cleverness has gotten the better of his compassion. What he prescribes, for patients and doctors, is anarchy.”

Mark Hall in a review of Veatch’s book in the New England Journal of Medicine ends by stating “Veatch does us a real service by mapping such an unappealing world. His articulation of the strongest conceivable version of patient autonomy convinces at least this reviewer of how fundamentally wrong this position is.”

I will, for now, leave the last word with some patients. After reading the 1999 Gawande article, Susan Zimmerman, a physician and mother of a child with a chronic condition, wrote in a letter to the editor of the New Yorker (November 1, 1999): “Some people may feel that the techniques…that a good clinician uses to persuade a patient to choose the treatment the physician desires smacks of paternalism…Preserving kindness involves (the physician) shouldering some of the responsibility for patients should they desire it.” The famous e-Patient Dave who survived kidney cancer weighed in on January 9, 2009 when he read the New England Journal of Medicine review of Veatch’s book. In his e-patients.net blog he wrote, “As someone whose butt was saved by excellent medical care, I find it unimaginable to consider doctors ‘incapable of determining what will benefit’ me. What, like I was going to think up high-dosage Interleukin-2 on my own?”

In the future I will try to figure out for myself what the ideal relationship between physician and patients should be in the 21st century. In one post e-Patient Dave says “Physicians are coaches, patients are players.”

I have heard Dr. Danny Sands speak about embracing “knowledge symmetry.” I guess I just do not yet understand what these slogans really mean for me and my family, my profession, my patients and my country. I have a headache. That is enough for now.