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Bad pharma

According to Cory Doctorow at bOING bOING, physicians often prescribe drugs that are ineffective or harmful because pharmaceutical companies provide misleading data, according to an article by Ben Goldacre in the Guardian, “The drugs don’t work: a modern medical scandal.” Goldacre is the author of the forthcoming book Bad Pharma: How Drug Companies Mislead Doctors and Harm Patients. Summary from the caption on the photo above Goldacre’s article: “Drugs are tested by their manufacturers, in poorly designed trials, on hopelessly small numbers of weird, unrepresentative patients, and analysed using techniques that exaggerate the benefits.”

It’s a tough problem: you depend on your physician’s authority, and the authority of the healthcare establishment, to guide your decisions about health. Even if you trust your physician, can you trust the voices persistently whispering in his ear, especially if those voices are motivated by profit as a priority. Do pharma companies place their profit above your health? Don’t assume an easy answer – it’s complicated, though Goldacre’s book blurb suggests a belief that pharma uses the complexity as a cloak (“All these problems have been protected from public scrutiny because they’re too complex to capture in a sound bite.”)

In the Guardian, Goldacre writes:

Drugs are tested by the people who manufacture them, in poorly designed trials, on hopelessly small numbers of weird, unrepresentative patients, and analysed using techniques that are flawed by design, in such a way that they exaggerate the benefits of treatments. Unsurprisingly, these trials tend to produce results that favour the manufacturer. When trials throw up results that companies don’t like, they are perfectly entitled to hide them from doctors and patients, so we only ever see a distorted picture of any drug’s true effects. Regulators see most of the trial data, but only from early on in a drug’s life, and even then they don’t give this data to doctors or patients, or even to other parts of government. This distorted evidence is then communicated and applied in a distorted fashion.

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Science, lies, evidence, knowledge

In so many fields, owing to the Internet-driven democratization of knowledge, we learn that that the power associated with hoarded knowledge has been abused, and the position of leadership – the priesthood – associated with the acquisition of knowledge has been leveraged to manipulate and deceive. “Everything you know is wrong!”

David Freedman has a great article in the Atlantic about medical deception, called “Lies, Damned Lies, and Medical Science,” which focuses on Dr. John Ioanniddis’ dedication to exposing bad science in medicine.

He’s what’s known as a meta-researcher, and he’s become one of the world’s foremost experts on the credibility of medical research. He and his team have shown, again and again, and in many different ways, that much of what biomedical researchers conclude in published studies—conclusions that doctors keep in mind when they prescribe antibiotics or blood-pressure medication, or when they advise us to consume more fiber or less meat, or when they recommend surgery for heart disease or back pain—is misleading, exaggerated, and often flat-out wrong. He charges that as much as 90 percent of the published medical information that doctors rely on is flawed. His work has been widely accepted by the medical community; it has been published in the field’s top journals, where it is heavily cited; and he is a big draw at conferences. Given this exposure, and the fact that his work broadly targets everyone else’s work in medicine, as well as everything that physicians do and all the health advice we get, Ioannidis may be one of the most influential scientists alive. Yet for all his influence, he worries that the field of medical research is so pervasively flawed, and so riddled with conflicts of interest, that it might be chronically resistant to change—or even to publicly admitting that there’s a problem.

At e-Patients.net, Peter Frishauf writes a response to the Atlantic article, called “Fixing those Damn Lies.” How do we fix them? The Atlantic piece discusses Ioannidis’ suggestions to change the culture of medical research, and reset expectations. It’s okay to be wrong in science – in fact, it’s almost a requirement. The scientific method is about testing and proving hypotheses – proving can be “proving wrong” as well as “proving right.” Either way, you’re learning, and extending science.

Frishauf also mentions how medicine and science should embrace the Internet “and figure out a way to better incorporate patient self-reported and retrospective data in trials,” which is one goal of participatory medicine. He also suggests “giving up on tenure-tied-to-the-peer-reviewed-literature, and embracing a moderated form of pre and post-publication peer review,” something that came up in discussion when I spoke at the Central Texas World Future Society Tuesday evening. (More about this in an earlier e-Patients.net post by Frishauf.)

Knowledge is not a citadel or ivory tower, but a network that we could all be working, challenging, and improving.

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Regina Holliday

Regina Holliday became a passionate, powerful e-patient advocate after frustrating encounters with the healthcare system as her husband, Fred, was dying. Her mural “73 Cents” is a visual depiction of the experience. [Link to Regina Holliday’s Medical Advocacy Blog]

We’re all patients at some point, and so many of our encounters with healthcare systems are difficult. It’s time to stop seeing healthcare as an impenetrable system – we’re all stakeholders, and we can have an impact. Here’s a video of Regina…

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Unanswered questions about e-patients

Susannah Fox has posted two sets of questions about e-patients, sent by Liav Hertsman and his colleagues at Tel Aviv University, that call for further research.

First set:
1. How would you describe the typical online active e-patient in terms of demographics?
2. In which stages of the diseases do e-patients usually need medical information the most? Why?
3. In which stages do they search for information about drugs?
4. How substantial is the e-patients’ drug search in comparison with their overall search about health?
5. How dominant and reliable is user-generated content (UGC) information in the eyes of e-patients?
6. Do e-patients who are interested in UGC also tend to cross-check the information, using professional sites or do they tend to rely solely on the UGC? Why?
7. What do the e-patients value more, specific information or general information? Is it treatment stage related?
8. In your opinion, should a health site offer diverse information or focus only on one area of expertise? Why?
9. What tools are important to have on a health site (i.e. communities, experts’ reviews, doctors’ ratings, drugs’ ratings, etc.)? Should a health site offer several tools? Why?
10. Do e-patients prefer a one-stop-shop site, where they can find every information related to health and every tool they need, or do they prefer to gather information from several sites, each with a specific specialization?
11. What causes an e-patient to return to a specific health site?

Second, followup set of questions:
1. Are there any specific studies related to online behavioral health resources that you might recommend?
2. Are there any specific studies directly related to the use of online health assessments?
3. Are there any specific studies that might support or refute the merits of utilizing online health resources for mental/behavioral health issues?

Note very useful comments below the post.

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Good medicine

E-Patient Dave deBronkart

E-Patient Dave deBronkart

Just three years ago, my friend Dave deBronkart’s life changed with a routine x-ray that showed a troubling shadow on his lung, which turned out to be the result of a metastaszied stage IV, grade 4 renal cell carcinoma. Prognosis for long-term survival was dismal, statistically: median projected survival time was 24 months.

Dave, an online maven and communicator who consumes and shares information and builds his knowledge base with real intensity, immediately looked online for information about his disease. He joined the Association of Cancer Online Resources (ACOR), and started an online journal at CaringBridge.

I met Dave through colleagues in the e-Patients Working Group that the late Dr. Tom Ferguson formed, a group that became founders of the Society for Participatory Medicine. Participatory medicine emphasizes the active role of the patient in the process of medical treatment. This is more possible because of the Internet and the emerging, evolving abundance of information and information channels. Before, a patient’s exposure to healthcare knowledge was mostly at physician or hospital touchpoints that were inherently limited in duration. There was no great way for patients to study their conditions and find others with the same or similar conditions, getting similar treatments. If you did find and meet one or two others with the same condition, there usually wasn’t a facility for comparing notes and data. With the Internet, that’s all changed. (Tom Ferguson saw this coming in the early 90s, which is when he and I met and started talking).

I could write much more about participatory medicine and the concept of the e-patient, but I wanted to say more about Dave. Wendy White at Sirensong posts about a recent study of empowered patients. A key finding: “Personality traits seem to play a much stronger role in patient empowerment than education, income or source of health insurance.”

The study found that empowered patients have: “a high need for cognition, which means that they’re not happy with simply knowing a particular prescription successfully treats their condition, they want to know why it works. These people want to understand not only their condition but their treatment options.”

This definitely sounds like ePatient Dave, and reading it made me think of another Dave characteristic: When he found out he had stage IV cancer, Dave didn’t let it define him. He didn’t become a person who was dying, any more than anyone else. He was still Dave, confronted by a challenge, and intent on finding his way through it.

I remarked a couple of days ago that a disease seems to become terminal when it’s discovered. I might have meant that contact with the healthcare system and its treatments can kill you faster than some disease, and I think I’ve seen that before, with my father, who had colon cancer and would have could have lived well and longer had he not agreed to surgery. (That’s 20-20 hindsight, but it’s accurate.)

But I also suspect that we can think ourselves to death. I’ve come to believe that our internal conversations set a path, drag or nudge us in a particular direction. If you want to live longer, it’s probably best not to spend too much time thinking you’re dying (though we all are, of course, at least evidence suggests that’s the case.)

I’m pondering all this as I plan what I’m going to say when I speak to a patient advocacy group a week or so from now. I’m talking about patients and social media, how our web conversations and access to information are transforming medicine, changing what it means to be a patient. I think we’ll see more patients like Dave deBronkart, jumping into their treatment with both feet, learning everything they can about their conditions, finding or building communities of support and hope. This is the real “healthcare reform,” I think.

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Data glitches: how to get right with your customer

My friend and colleague e-Patient Dave deBronkart explains how misinformation from a customer service agent for Verizon led to a massive international data charge on his mobile phone bill. Verizon was stellar in their handling of the problem. Key point: they didn’t try to make him wrong or make it his problem.

I won’t try to paraphrase his post – it’s pretty rich. Read it here. He explains Verizon’s checks and balances for mitigating the problem, what he did as an empowered/engaged/activated consumer, and what the implications are for empowered patients and people dedicated to improving healthcare, where data issues are common and a big deal.

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Kevin Kelly on Participatory Medicine

I’m part of the Society for Participatory Medicine, and we’ll soon be publishing the Journal of Participatory Medicine. (We already have a very active blog at e-patients.net.) Kevin Kelly posted a nice summary of our intentions at The Quantified Self:

The newest channel in this effort is the launch of a peer-reviewed science journal dedicated to research in the field of “participatory medicine” — as in patient participant. (Sometimes labeled Health 2.0) There is a great overlap with self-tracking and the quantified self (although by no means is all self-tracking health related), so I think this new journal will appeal to self-trackers and self-trackers to the patient-participant field.

This journal, called sensibly enough, the Journal of Participatory Medicine, will use an open source model (no fee to get the articles) which is both very much in the spirit of the paradigm, but also very future-proof (free is where all journals are headed).

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More on personal health records

My friend and colleague Dave deBronkart, aka “e-patient Dave,” was interviewed by the Boston Globe about his experience setting up personal health records at Google Health, which I blogged about last week. The gist is that Dave is an early adopter using a very new kind of system. Most hospitals don’t even have sophisticated digital records-keeping systems. The Google Health folks say “the records will improve as more precise coding language is adopted in the coming years.” Meanwhile e-patients like Dave will be pushing for better access to better information.