How the New York Times Could – And Should – Use Engaged Patients to Revolutionize Medical Reporting

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As I have written about previously on ASweetLife, I – like many other people with diabetes – was disappointed by the factual inaccuracies and misapprehensions in the New York Times’ recent piece, titled “Even Small Medical Advances Can Mean Big Jumps in Bills,” on the high cost of devices and drugs for Type 1 diabetes.

The reason I care is simple: The New York Times is one of the most respected and trusted papers in the country. It has the ability to affect policy and guide public conversation – and, in the case of healthcare issues, to influence both treatment decisions by doctors, and coverage decisions by private and public insurers. As a result, the Times has a moral responsibility to get every detail right. And if it doesn’t get things right, it needs to correct its mistakes.

In response to the emails and tweets from people with diabetes, the public editor of The New York Times, Margaret Sullivan, investigated some of these concerns, and published a response on her blog last Friday with the title “An Uproar Over A Diabetes Article With a Back Story.”

As was also true with the original piece, my first reaction was excitement. But unfortunately, I ended up disappointed again. Not only did the public editor’s response incorrectly assert that the descriptions of the devices in the original article were “accurate” (they weren’t, and the mistakes still haven’t been corrected), but it mistakenly concluded that what the Times perceived as a sudden flurry of criticism in the comments section and on Twitter must have been sparked by a JDRF blog post (and supposed email, which I trust exists, but which I have not seen myself), in which JDRF encouraged people to leave comments on the Times’ site, and to use the Twitter hashtag #notjustagadget.

The public editor’s response then used the possibility of JDRF’s involvement as evidence of a hidden “back story” to the “uproar over a diabetes article,” to quote the post’s headline – and concluded that the majority of people who left those negative comments and sent those questioning tweets must have been acting under the influence of JDRF.

To me, this logic didn’t make sense. Considering that JDRF is the country’s largest advocacy organization for people with Type 1 diabetes, I don’t understand why its publicization of the article would be considered inappropriate to begin with – let alone why comments inspired by its blog post should have been considered biased or invalid. People with Type 1 diabetes may have broken pancreases, but our capacity for independent thought is fine.

I also didn’t understand why the public editor – who included a link to my original piece on ASweetLife (thank you!), and clearly put substantial effort into her response – never contacted me (or any of the other people I know who submitted concerns) with any follow-up questions or requests for sources or clarifications. The investigation appeared to only involve internet research, and conversations with reporters and editors at the Times.

The result, unfortunately, was that instead of responding to or addressing people’s concerns over the original article, the public editor’s response inadvertently compounded them. As Nancy Liu, Managing Editor of diaTribe (a free, online newsletter for people with diabetes) put it to me in an email, “The tone of the public editor’s response echoed what I disliked about the one of the original article – that people with diabetes are easily manipulated and used as pawns. In the editor’s case, it was by JDRF’s advocacy, and in the article’s case, it was about how people with diabetes are passive consumers easily tricked by industry into buying expensive gadgets with little added value.”

I agree entirely with Liu; in fact, I was so disappointed and frustrated by the public editor’s post that I emailed her to see if someone from her office might be available for a phone call. The office responded, and on Tuesday afternoon, Sullivan’s assistant, Jonah Bromwich generously gave me a full hour of his time.

Our conversation convinced me that the intentions of the public editor were good, and I want to stress how sincerely I appreciate her taking the time to publish a response to begin with. I’m convinced that the public editor and Elisabeth Rosenthal both have their hearts in the right place – which is why I asked Mr. Bromwich if he could pass along a similarly heartfelt request:  that the public editor reconsider her conclusions, talk to a few of the most active commenters directly, and publish an additional public response.

If she does – and I very much hope she will — I would like her to address two things (other people may have additional suggestions):

First, while I know that the public editor is not allowed to make corrections to the article herself – that’s the job of the corrections desk, which so far has not responded — I believe it is within her purview to point out that, far from being “accurate” in its descriptions of devices, the original article continues to contain factual errors that should be corrected. This is particularly important in the case of drugs and devices, because any misperceptions and mistakes about these supplies can have enormous consequences for insurance coverage. (Unfortunately, the author is continuing to make errors in public: for example, in this subsequent podcast [diabetes starts around minute 29] she repeatedly confuses insulin pumps and glucose meters.)

Second, I would like the public editor to reconsider the Times’ puzzling conclusion that the majority of negative comments on the original piece must have been instigated by JDRF (as well as other unnamed “advocacy groups” who are accused of “act[ing] similarly”) – and, as a result, that they are biased and dismissible. Neither of these conclusions is true.

Part of the public editor’s misinterpretation may have been due to the fact that the initial tweets about the article were sent out before the Twitter hashtag #notjustagadget was established (which further proves the point that JDRF did not trigger the response). It has also occurred to me that the first version of a Storify piece that I myself passed along to the public editor may have compounded this false impression, since it could have been interpreted (albeit incorrectly) as implying that JDRF was the first entity to respond.

Had the Times contacted me or the Storify authors directly, we could have easily corrected this misunderstanding. Indeed, after speaking with Mr. Bromwich, I mentioned this potential misinterpretation to Nancy Liu,(who put together the original piece for diaTribe), and she created an updated version  that makes the true chronology clearer. (I still don’t really see why this matters – but I do want to clarify the point.)

I continue to believe that the public editor is the person best suited to address the unresolved concerns about the piece, and considering the effort she has already devoted to this, I hope she’ll consider writing an additional post.

The more I think about this whole affair, however, the more I’ve come to suspect that the real issue here goes far beyond this particular piece or the public editor’s response. Instead, it reflects what I see as a much larger issue in our society: a reluctance, not just by reporters or their editors, but by doctors, politicians, and government and private payers, to recognize — and rely on — patients as experts in their own diseases.

Let’s consider the example of the New York Times: the original article was not reviewed by qualified patients (who used the drugs or devices in question), and the public editor’s office did not contact patients directly in its investigation of their concerns. The result has been factual errors, misapprehensions, and tone-deafness that has alienated many of the very people its reporter and public editor were trying to represent.

The situation could have played out quite differently. If I or other people with Type 1 diabetes who use the drugs and devices in question had been called upon – or responded to – directly (at any stage of the reporting or follow-up process), we could easily have provided proof that the article’s description of the devices and insulin were not, in fact, “accurate.” (For a partial list, see my previous article or this well-sourced summary from Close Concerns.) We could have warned that the tone of the original article, and the quotes from the doctors that were included in it, were off-base. We could have clarified that the public response to the piece was not the exclusive work of JDRF, but an organic and grassroots response from hundreds of individuals with legitimate concerns, who grasped on to the #notjustagadget hashtag as a way to focus the conversation.

The public editor’s response points out that Elisabeth Rosenthal ran the article past two people with Type 1 diabetes before publication – her mother and another reporter – to check it for accuracy and tone. I appreciate this effort – it indicates a genuine desire to get things right. But the article’s factual errors and the public’s response to its tone are evidence that this informal review was not sufficient, and that the Times, as an organization, must take a different, more structured approach.

And that brings me to a proposal, which I hope the Times’ editorial board – and that of every other news organization worth its salt – will consider: that the Times take a cue from the FDA’s Patient Representative Program, and establish a network of expert patients whom reporters could call upon to review articles about specific diseases – not just diabetes — before they go to print. These patients would not serve as sources, or quote approvers, but as experts.

As is true in the FDA’s program, participants would have a history of living personally with the disease in question, they would have connections to other people who have it (whom they could reach out to with specific questions), and they would be up-to-date on scientific research, political issues, devices and drugs relevant to their disease. People would have to apply to be part of the representative program, and their contact information would be made available to the Times’ entire reporting staff – which in turn would be strongly urged, if not required, to reach out to a qualified member to review their articles before publication. The goal would be to establish patient feedback as a routine part of the fact-checking process.

These patient representatives might not always have the same opinion (nor should they!), but their personal knowledge and expertise would enable them to find – and help correct – factual errors and issues of tone that even the most fastidious reporter might not   be able to.

If that sounds like a lot to ask for, please note that in the case of diabetes, the FDA’s patient representative program has more participants than it can regularly use. And in the case of Type 1 diabetes in particular, I myself could personally nominate at least a dozen people who would qualify. I would suspect that the same would be true for other diseases as well.

The establishment of a patient representative resource wouldn’t just improve the quality of the Times’ medical reporting; it would establish the Times as an innovative leader in the changing landscape of medicine and health. As the FDA puts it on its own patient representative website, “We believe the right of patients to participate in [the medical product approval] process is undeniable.”

Isn’t it time for the Times to follow suit?

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2 Comments on "How the New York Times Could – And Should – Use Engaged Patients to Revolutionize Medical Reporting"

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Catherine
This is Catherine – the article’s author. I forgot to mention another really important reason that publications should engage with patients: we can help publications like the Times find great story ideas! For example, no one would deny that diabetes is really expensive to live with, and that access to drugs and supplies is a big deal. The real question is WHY they’re so expensive. What’s the true cost breakdown for a test strip (I know it’s not just the materials – there’s a lot of back-end quality assurance and customer support)? WHY are there no generic insulins (scott strumello… Read more »
Engaged Patient

If you tweet in response to this, some of us are using the hashtag #patientengagement

The Twitter handles for NYT are: @sulliview (the public editor), @jillabramson (the executive editor of the Times), @nytrosenthal (the reporter of the original piece) and @rlccorbett (the editor of the original piece) 

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