The organizing themes for the course include:

(1) Who created and disseminated health information, and how was that information communicated to the public?  How and why have particular audiences been targeted by gender, age, race, ethnicity, region, and class?

(2) How did a symbiotic, sometimes adversarial relationship emerge between two of the most successful industries of the twentieth-century—medicine and the media?  What have been the changing patterns of collaboration and conflict?  And what have been the consequences of this partnership for the public’s health?

(3)  How have organizations with competing agendas used the media to promote their economic, political, and social interests?

(4) How has the mass media shaped cultural representations of physicians, biomedical researchers, health, and disease, as well as health-related public debates and political controversies?  How have media portrayals shaped public expectation of medicine and perceptions of the medical profession?  And how has the media influenced perceptions of health and illness by the medical community?

Readings for this week:

*Pauline W. Chen, “Medicine in the Age of Twitter,” New York Times (June 11, 2009).

Carleen Hawn, “Take Two Aspirin and Tweet Me in the Morning: How Twitter. Facebook, And Other Social Media Are Reshaping Health Care,” Health Affairs 28 (2009): 361-368.

*Susannah Fox and Sydney Jones, “The Social Life of Health Information: Americans’ Pursuit of Health Takes Place within a Widening Network of both Online and Offline Sources,” Pew Internet & American Life Project (June 2009), pp.1-72.

*Sachin H. Jain, “Practicing Medicine in the Age of Facebook,” New England Journal of Medicine 361 (2009): 649-651.

Leslie Beard, Kumanan Wilson, Dante Morra, and Jennifer Keelan, “A Survey of Health-Related Activities on Second Life,” Journal of Medical Internet Research 11 (2009): e17.

Websites of Interest (review of these sites not required, but each may serve as a research reference)

http://www.patientslikeme.com/

http://e-patients.net/

http://www.hellohealth.com

http://secondlife.com

Suggestions welcome in the comments for what else these undergrads should read – and what I should tell them!

Yesterday the Institute for Healthcare Improvement’s “WIHI” series hosted a terrific webcast on the Open Notes project that’s being funded by the Robert Wood Johnson Foundation. (I need to dig up the link to the event’s archive, but I’m in a hurry.)

Speakers were Dr. Tom Delbanco of Beth Israel Deaconess Medical Center (a pioneer of patient access), Dr. Mary Merkel of Dartmouth-Hitchcock, and Bob Desaulniers, a patient of Dr. Merkel’s who lives in my own town, Nashua NH. Gotta go meet them!

Inevitably we revisited the hoary concerns about the horrible things that will happen if we see our health data. Dr. Delbanco cited a paper from the 1970s that advocated giving patients their medical records. And this morning Ted Eytan dug it out.

In this era of evidence-based medicine, isn’t it time for policy makers to look at this evidence?

Ted’s post:
________________________________________
McLaren P. The right to know. [Internet]. BMJ 1991;303(6808):937-938.

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.

In his extraordinary essay in the new Journal of Participatory Medicine, Richard Smith expressed how perilous reading about medical research has become. Speaking of the peer review process that supposedly protects the accuracy of published results, he says:

After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value.

And what sort of anti-establishment radical is he? The 25 year editor of the British Medical Journal, one of the top journals in the world. The ones we’re supposed to trust.

That echos Marcia Angell:

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

It’s apparent that e-patients, clinicians, and policy makers all need to fortify their knowledge of  how research is supposed to work and how it actually does.

So although I don’t know David Rind MD, of Beth Israel Deaconess (my hospital), I was happy to learn of his new blog, courtesy of Paul Levy:

Evidence In Medicine
How evidence impacts medical decision making

These are thoughtful essays, and I welcome this new voice. His posts so far:

11/14: First post and origins
Although an early participant in the world of Usenet newsgroups, I’m a latecomer to the world of blogging. I don’t read or participate in blogs often, and as a newbie will undoubtedly make mistakes of etiquette and function…

11/16: Opinion, Evidence, and Consensus Statements
In the future, I’ll write more about this subject, since the distinction between expert opinion and clinical experience seems to cause unending confusion to people who write and talk about EBM….

11/17: ARBITER 6 and Combining Therapies with Statins
The results from ARBITER 6 were released this week. The interpretation is less clear…

11/19: USPSTF, Mammography, and Grading Recommendations
It’s hard to have a blog about evidence and medicine without commenting on the changes to the USPSTF’s breast cancer screening guidelines….

The post that drove me to write this, though, is his thoughtful and balanced discussion of something I spoke about last month (slides here) at e-Patient Connections 2009, a healthcare marketing conference:

11/21: Pharma, Evidence, and Trust

In this post, Rind describes his own history with pharma, starting with the excellent results produced with AIDS, and then discovering the manipulations of “evidence” that have caused so many negative headlines for the industry. Excerpt:

By a few years later, though, I was finding myself as distrustful and angry at Pharma as anyone out there. I spend a lot of my time reading research papers and interpreting evidence, and realized one day that Pharma was employing people at least as smart and knowledgeable as I to come up with ways to trick us all about what studies showed. One example of this is running parallel studies of an agent and then only publishing the positive studies while burying the negative studies, as was done with trials of SSRIs in adolescents. The concept of a p value becomes essentially meaningless if researchers perform an unknown N of parallel trials and then publish the ones that show a positive result.

My message at the October conference was that in a world of social media, reputation is everything, and people better knock off any trust-destroying behaviors. My talk was titled “Authentic Value: Being Known in e-Patient Communities.” This is consistent with the definition of participatory medicine, which is all about partnership and collaboration.

And trust.

Rind’s message, his teaching, is accessible to lay readers (engaged patients) who are comfortable with some basics of what evidence is about. (I’m no deep statistician but I know exactly what he meant.)

Yes, we  e-patients do talk. Learning to research is a fundamental e-patient skill, and we teach (and blog) about how to filter crap and distortions, because to us it’s  not just business, it’s often life and death. Glad to have this new, empowering blogger. (He’s also on Twitter as @DMRind.)

btw, a vital resource for understanding health reporting in the consumer media is Health News Review. We’ve written many pieces here about understanding statistics (browse that category). As a self-educating patient I wrote about evidence-based medicine (EBM) on my own blog.

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.

From Drug Companies & Doctors: A Story of Corruption in The New York Review of Books, around New Year’s.

Dana Blankenhorn of the ZDNet health blog called it “a bombshell.” I couldn’t agree more. And I must say, with all the smart people in this community, why on earth haven’t we heard more about this??

And how on earth are we supposed to be empowered participatory patients if we can’t trust the world’s leading journal?

For one thing, we can have our eyes wide open about the evidence we’re supposed to trust. Get educated. Learn how to read health news reporting – including the journals. Wise up.

Think critically. It’s a fundamental part of being an empowered patient.

_____

Related reading:

No *other* conflict of interest, huh? (11/08)

Negative data on Seroquel suppressed by manufacturer (2/09)

Dr. Reuben deeply regrets that this happened (3/09)

—–

As empowered, engaged patients we have a responsibility to evaluate the articles we read. A case in point is this week’s Associated Press article Any Spread Of Breast Cancer Raises Risk Of Return. It’s about a paper in this week’s New England Journal of Medicine that found a 50% increase in the chance of cancer recurring, and quotes an expert as saying

“I think it will influence treatment. If we’re considering treating the patient, we probably should.”

Can you spot the flaw in that reasoning, if all you have is that number? That’s all the article reported, and that’s a problem.

The problem is relative risk reduction. As we discussed last November in Making sense of health statistics, relative risk is an unsound basis for policy decisions, because you can’t tell the actual size of the impact. That affects you as a patient and you as a citizen thinking about policy.

In the study, did the 50% change mean represent a change from 200 patients per thousand to 300 per thousand, or from 2 per thousand to 3 per thousand? (Specifically, if we spend a zillion dollars based on this result, will we affect 1/1oth of the US population, or 1/1,000th?

Think about it for your own body. Your health provider suggests a treatment and says it’ll reduce your chance of a problem by 35%. (That’s the number commonly cited for statins like Lipitor.) Sounds impressive, right? But that’s a relative risk number. The raw data showed that among the general population, 1.59% had a coronary event, and among Lipitor users, 1.02% had one anyway. So for the $25 billion we spend on Lipitor in the US, we affect one patient in 200.

So now imagine your provider says “There’s a one in 200 chance this prescription will make a difference for you. Want it?”

I think there are two levels of concern for us as patients engaged in the new world of healthcare:

• For you personally, ask your providers for the absolute numbers. They may need to go digging, because they themselves may not have been given the numbers. But you have every right to know, eh?
• At a national level, the same thinking must be applied to policy decisions.

I wrote a note to the author of the AP article asking if she can get the absolute numbers. (As usual, the original article in NEJM isn’t open for us to evaluate.)

Related resources:

• Health News Review – a superb resource for understanding how to evaluate health news. (Thanks to Ted Eytan for the tip last year.)
• Evidence-based medicine – my post last November citing the Lipitor numbers, as reported in Andy Kessler’s book The End of Medicine.