Thursday, December 06, 2012

Are Today's Social Media Sites Helpful in Managing Chronic Diseases Like Diabetes?

In an "Open letter to NPR about Diabetes Social Media piece," Kerri Morrone Sparling of Six Until Me, attempts to refute a claim made by Jason Bronner, a doctor at the University of California San Diego Medical Center, who said "There's no proof in diabetes that social networking is helpful."

Sparling, receives free products from two drug companies, and one pays her to speak at events and contribute at her site. In her disclosure statement Sparling says she is "employed by, run disclosed advertisements from, or consult with dLife, diaTribe, Incendia Health, Agamatrix, DexCom, BetterHealth LLC, Johnson & Johnson, LifeScan, Novo Nordisk, Children with Diabetes, Roche, The Juvenile Diabetes Research Foundation, Animas Corp, WEGO Health, and CVS."

Such disclosures, however, are not enough for Jeff Chester of the Center for Digital Democracy, who says people don't read disclosures and that "pharmaceutical companies are using social media to promote their gadgets and drugs in a deceptive way." Chester, as you might recall, was a guest on my Pharma Marketing Talk Show (listen to the podcast: "New Media Tracking Technologies - Implications for Online Consumer Privacy").

Disclosures aside, I want to get back to the question of whether or not today's social media sites are "helpful" in diabetes (or any other chronic disease) and the stake that pharma companies have in promoting social media for diabetes.

Dr. Bronner obviously has a stake in proving whether or not SM helps patients. His study was featured in a segment of a local San Diego NBC affiliate news program, which concluded with a statement from Dr. Bronner's group that said "social networks outside [my emphasis] the Internet do improve chronic disease management":

View more videos at:

Sparling says "initial evidence suggests that the benefits of social media to people living with chronic illness are real, even though large scale studies have not shown precisely who benefits and how much" and
"Dr. Bronner’s study leaves out one of the most important benefits that is consistently mentioned by people with diabetes online: connecting with others. When they connect, they no longer feel alone, and they receive much needed emotional support to help them go through the ups and downs of life with this chronic condition. And some of the end result measurements of health outcomes in diabetes, such as HbA1C, fail to capture all the preliminary steps necessary to achieve the behavior changes that result in improved, quantifiable outcomes."
OK. What we have here is a failure to communicate. On the one hand, there's the physician who's looking for "evidence" that diabetes is being managed. That involves numbers such as Hba1C.

On the other hand is the patient argument that "emotional support" is also a key benefit.

One could argue that BOTH sides have merit, but if HbA1c levels in type 1 diabetics are are not brought to normal levels, then the disease is not being "managed" no matter how much "emotional" support the patient receives from social media.

Dr. Bronner's study also aims to determine if social media can help diabetics "improve their knowledge skills and attitudes about their condition." Sparling's addresses the latter, but fails to say anything at all about the former; i.e., improving knowledge about diabetes.

I notice that there are a few dozen signers of Sparling's "open letter." Most of these are members of the "diabetes advocates" organization; i.e., people with diabetes. There is at least one pharma person who has also signed the letter and urged others to do so by (re)tweeting about it: Dennis Urbaniak (@Durbaniak).

Urbaniak, who is VP U.S. Diabetes at sanofi-aventis, was also quoted in the NPR piece about what his company has learned from type 1 diabetics on social media:
"In the past, the ads would always show the perfect blood sugar number, and the community says, 'You know, that's a bit insulting because it implies it is always easy to get this. Show a number that's high or show a number that's low. Make it real.' And so this is the kind of feedback that's been really helpful."
Sanofi must also have learned that knowledge and education are also important social media deliverables for people with diabetes. That is why they launched "Diabetapedia," the goal of which is "to help meet educational needs of diabetes community." According to Laura Kolodjeski, Community Manager, Sanofi US diabetes, the overarching goal is to create "a single, comprehensive place where anyone can find and share definitions of diabetes-related terms and phrases" (listen to this podcast: "Diabetapedia: 'Google' for Diabetes").

Dr. Bronner's study is focused on one closed (by invitation only) social media community. If he was to look at Diabetapedia, I am sure he would find there is a lot more the site can do to "improve the knowledge skills" of people who use the site. Meanwhile, I have been running a little survey (here) to determine how sanofi can improve the usefulness of its Diabetapedia web site. Here is some preliminary results of that survey in a chart:

Social Media as it was Way Back When
Maybe some of these ideas will soon be implemented on Diabetapedia, but right now pharma-sponsored social media sites like this do not even equal the knowledge improvement skills that were available via Internet support groups as long ago as 1996. In support of that, I'll give you one example based on my own experience with "DIABETES-EHLB," an email-based discussion group for people with diabetes, diabetes educators, caregivers, and endocrinologists (for more background, read "Pharma 'Social Networks': Close But No Cigar Award"). It was sponsored by Hoechst Marion Roussel, a pharma company that later merged with other companies that eventually formed Sanofi-Aventis (funny how me and sanofi and its its predecessors have had relations going back to 1994; NOTE: I currently am NOT paid by sanofi or any of its agents and I do not run ads from pharma companies, unless they are Google adwords).

Contrary to Urbaniak's experience, members of DIABETES-EHLB often discussed "numbers" like HbA1c for managing their disease. Here's an example of a web archive page found on the "way back machine:"

Responses included detailed information about HbA1c tests copied from government sites like the National Institutes of Health, highlights of presentations at an annual ADA conference, and advice for where to have the test done by mail. If you are interested in seeing these responses, click here (pdf).

As opposed to this, here's what Diabetapedia says about A1c:

I am impressed mostly by the emptiness of the page, which may reflect sanofi's lack of interest in "numbers." I assume that non-pharma diabetes social media sites offer better "knowledge skill" building than this.

Diabetapedia may not be the best example of what sanofi is doing in concert with the diabetes online community (DOC). You might want to check out "Dennis Urbaniak, Joan Mikardos, and Laura Kolodjeski of Sanofi US Receive the 3rd PharmaGuy Social Media Pioneer Award."

Sanofi is also pioneering in their use of "real patient stories" through its "Diabetes Co-stars Casting Call" contest, which is soliciting video submissions from patients. To learn more about this, listen to this podcast: "Sanofi US to Develop Documentary Featuring Real Patients and Their Stories."


  1. Unfortunately, Jason Bronner's conclusion relies primarily on a "surrogate" of HbA1c, which if you recall, back in 2007, some authors from the Mayo Clinic reported that only 1 in 5 diabetes clinical trials actually measured the effect of drugs on quality of life and risk of complications. In the September 29, 2007 edition of The Lancet entitled "Patient-important outcomes in diabetes—time for consensus" [Montori VM, Ghandhi GY, Guyatt GH. Patient-important outcomes in diabetes—time for consensus. Lancet 2007; 370: 1104-1106] the authors suggest that most diabetes clinical trials ignore virtually everything except glycemic control. In the article, the authors wrote:

    "Unfortunately, HbA1c loses its validity as a surrogate marker when patients have a constellation of metabolic abnormalities, when the most common complications are macrovascular, and when the treatments have multiple poorly understood effects."

    In effect, the presumption is that HbA1c is the only thing relevant in standards for care in diabetes, but there is a growing body of evidence that this over-reliance on the use of "surrogate" endpoints overlook critical elements of care, and may actually cause harm. For example, a growing number of studies show glycemic variability contributes to complications regardless of the reduction in HbA1c.

    And what about patients with HbA1c's that are already in the recommended range? Does Jason Bronner study the impact of social media on those patients? I'd be willing to bet that's an exclusion criteria for his trials.

    In their comments on Dr. Montori, et al's submission to the Lancet, John Cleland and Stephen Atkin went even further, stating that "Improved glycaemic control is not a surrogate for effective care of patients who have diabetes" [Cleland JGF, Atkin SL. Thiazolidinediones, deadly sins, surrogates, and elephants. Lancet 2007; 370: 1103-1104].

    Some patients with diabetes understand the need for quantitative results, but the relative sparsity of trials examining social media combined with an over-reliance on "surrogate" endpoints suggests the criticism of social media is thus far unfounded.

  2. Good point. I'm not sure Dr. Bronner is just using HbA1c or a combination of other "management" outcomes to determine effectiveness. I only used HbA1c as one kind of number diabetics must be concerned and knowledgeable about. Also, the kind of information you just posted is exactly what would be posted on an "open" online community such as DIABETES-EHLB if it were around today. That community included people with diabetes, diabetes educators, caregivers, and physicians -- not just patients supporting one another. There was GREAT value in the dialogue even though patients and physicians often were at "odds" with one another.

  3. I was diagnosed with T1 diabetes a few years ago (I was in my late 20s), and I found the diabetes social media groups to be very helpful as a newbie.

  4. Hi PharaGuy

    Well in full disclosure right up front, I helped draft the letter at Diabetes Advocates mentioned above. It is up to about 100 people who have joined to sign. Yesterday when I looked was about an even mix of DA members and others. There are patients advocates as well as a few caregivers on the letter. I know I was dumfounded by the number of people interested in adding their voice to it.

    It seems telling that to make a note of Kerri's disclose relationships. I wonder about the relationship between the researcher Dr. Bronner and the site he is studying at Wellaho. Some things I have seen define them as colleagues. If there is a relationship that should be disclose as openly as Kerri. What then seems telling is the presumption of conflict with a blogger who discloses relationships and the reverse with a researcher.

    The point of his study is not an investigation of social media as most define it (and we are practicing here.) Specifically an open two way conversation. Dr Bronner, as you note, is focused on one closed (by invitation only) community. That is not social media. It is as Wellaho says on their site, "an online treatment management system."

    Wellaho may well be valuable, but this study is much like others looking a close systems. If they are not evidence of social media's possible positive impact on diabetes neither is Dr Bronner's.

    Social media and management system Dr Bronner is studying seem as different as apple and oranges.

    Like my friend Scott, I would love to see a broader definition of successful management than just A1C. Two patients can have very similar A1Cs and significantly different levels of glucose variability. There is evidence that suggest variability is link to adverse outcomes. Hopefully social media can help show there is interest in broader measures of good care.

    Thanks for the conversation. I appreciate the work of DIABETES-EHLB. You make a great point about embracing not only patients but care professionals. I look forward to more professionals sharing expertise in the DOC that patients can then take back to their team and use to craft better care options. As the same time I hope these patients get from peers the valuable feeling that they are not alone and that their journey with diabetes is shared with peers who appreciate the struggle to make positive change.



    1. I also wonder about Dr. Bronner's connection with Wellaho. To be fair, however, Dr. Bronner did not criticize anyone's transparency or lack thereof.

      There are several high-profile "closed" patient communities, including patients like me, which requires membership, etc. Not exactly "by invitation only," but closed nevertheless. I am not sure that makes a site any less social than open communities. After all, in the real world, people also belong to "closed communities" such as the Breezy Point "gated community" in NYC.

      I too would like to see online chronic disease support/management/info sharing/whatever communities that have a mix of members similar to the membership of the now-defunct DIABETES-EHLB listserv.

      BTW, I think ACOr and its listervs do have physician members. Listen to this podcast:

  5. I bet they could be helpful. I haven't really seen a lot of material that has been helpful in the past, but with a proper platform it can be a great way for a doctor to interact with his patients and vice versa.

  6. yes without any doubt social media is taking wide part in controlling chronic Diseases..Social networking holds significant promise for engaging people in health and changing health behaviors. Two thirds-of people try to change their health behavior each year.But patients, and particularly those managing chronic conditions, are driving the use of social networking in health. Some patients seek social networking in health on general platforms like Facebook and Twitter. More advanced patients seeking deeper relationships online find support, solutions and tools from health-focused social networks.


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