Diabetes Opinion Leaders Paid by Roche to Curate Content on New Twitter-based Social Media Site

Diabetes Nest, according to its "About" statement, "is a Twitter-based diabetes network designed to help people discover the best conversations from the most meaningful voices. The Nest was created by Ignite Health and sponsored by Roche Diabetes Care, makers of ACCU-CHEK® products and services."

Ignite Health, an InVentiv Health agency, maintains the site. Fabio Gratton, chief experience officer at Ignite Health, said:

"Few argue that social media has transformed how patients and their caregivers share healthcare information and find support. But the sheer volume of content can be overwhelming. 

"So we asked ourselves how we could best help the diabetes community find and engage in the most timely, relevant and important conversations. The result is a simple, intuitive, compelling and ultimately self-sustaining diabetes social media community.” Diabetes Nest aggregates, sorts and ranks tweets from a curated list of diabetes experts" (read more here: "Roche Sponsors Diabetes Nest Twitter-Based Social Media Site").

All five of those "diabetes experts" are long-time patient bloggers who are "compensated for their time, effort and invaluable guidance." Caretakers include:

• Amy Tenderich (Diabetes Mine blogger)
• Gina Capone ("gina - your diabetes BFF" blogger)
• Kerri Sparling ("six until me" blogger)
• George Simmons (co-host of DSMA Live on BlogTalkRadio)
• Scott K. Johnson (co-host of DSMA Live on BlogTalkRadio and blogger at Scott's Diabetes)

Roche "has no control or influence over the content or frequency of the Caretakers' tweets."

Roche Diabetes Care has long been wining and dining diabetes bloggers at yearly "Roche Social Media Summits" held in nice places like resorts in Orlando, Florida. When I learned of the first summit held in 2010, I blogged that "Some Social Media Patient Opinion Leaders Want to be Paid Pharma Professionals." Diabetes Nest is, to my knowledge, the first such time that bloggers have been paid to be "consumer opinion leaders" in a manner similar to how pharma often pays physicians to be "key opinion leaders."

At a patient panel discussion during a 2010 conference, Allison Blass (Patient Blogger, Diabetes Activist, Lemonade Life), said "You need to pay some one's full time salary," referring to the desire of some pharma companies to interact with patients in online communities. "The only way to sustain growth and involvement in a [online] community," said Allison, "is to have someone who actually does it [manage social media interactions with patients] as their job... to become the person who is known and loved by the community."

Not that there is anything wrong with being compensated for your time, but pharmaceutical companies have to be careful how they provide compensation. In the case of Diabetes Nest, Roche probably supplies an "unrestricted grant," which is supposed to specify that the grantor (Roche) has no control over the content created by the grantee. The "grantee" in this case is probably Ignite Health, which owns Diabetes Nest (see NOTE below). Ignite Health is an advertising agency that works with pharmaceutical companies.

NOTE: Doing some WHOIS snooping, I learn that the domain diabetesnest.com is registered to "TWTCLK" and the administrative contact is Fabio Gratton, both located at the same address in San Clemente, CA. 

A pharmaceutical company providing unrestricted grants or other funds to an advertising agency in support of a patient site related to a product line is a bit controversial, IMHO, especially if there intends to be a "Chinese" wall between the funding and advertising interests. This kind of thing got pharma companies into trouble with the likes of Senator Grassley when "unrestricted grants" were provided to ad agencies to run independent accredited CME programs for physicians. ACCME, which accredits CME, now requires that CME providers to be independent of ad agencies to avoid conflicts of interest.

Disclosure: Fabio Gratton is a friend of mine and a very nice guy who deserves a lot of credit for his high quality, ethical work with pharmaceutical clients. He has been a frequent guest on my BlogTalk Radio show (eg, listen to "Facebook Timelines for Brands: The Implications for Pharma Companies"). He is not a client of mine, but he could be in the future. Knowing Fabio, I am sure he would welcome a discussion of "conflict of interest" in pharma-sponsored social media. The timing of this post may be a problem for him as he and his wife are expecting their first child any day. He must be very busy. Any way, I hope some day I get to visit him in San Clemente! 

A Call for Pharma Social Media Transparency Guidelines for Patient Bloggers

"Political strategists agree that the acrimony that has tinged many of the attacks on the news media this year feels different," according to a story in today's New York Times (see "Politicians Are Fighting Mad, at the News Media"). “Everyone has always bashed the media,” said Dana Perino, a Republican consultant who was a White House press secretary under Mr. Bush, “but I do think there’s something larger going on.”

What's going on is this: "the eagerness of many candidates to bypass the mainstream news media in favor of social networking or media outlets that they perceive to be embracing of their political platforms."

I believe the pharmaceutical industry has the same "eagerness" to bypass mainstream news media in favor of social networking. This is evident by the growth in Twitter use by pharma companies to push out news that it used to do via press releases distributed through channels cherished by reporters (eg, prnewswire).

Pharma PR and corporate communications professionals have been courting bloggers with dinner meetings and invites to events that previously only mainstream media journalists were privy to. Johnson & Johnson and Pfizer have lead the way ("Bloggers Dining at Pharma's Table", "Thank You Johnson & Johnson for Dinner", and "Chantix 'Roundtable' Apparently Not Round and Not a Table"). Of course, as a blogger, I have encouraged this.

But influential patients and physicians are becoming more important to pharmaceutical companies than industry bloggers like me. Patient bloggers, for example, are high up on pharma's list of people they'd like to influence. At least some influential patient bloggers have put out the PHARMA WELCOME mat (see "Some Social Media Patient Opinion Leaders Want to be Paid Pharma Professionals").

Many patient bloggers claim that it is important for pharmaceutical companies to "join the discussion." But pharma marketers and PR people -- who control the communications budgets within pharma -- want to "influence the discussion" and not merely "join the discussion" on social networks frequented by patients and physicians.

Within these online communities are "thought leaders" who feel equal to or superior to institutions such as the press, or government agencies. Pharma is poised to exploit these feelings and is probably doing so now as I write this.

The only issue I have with this is that a lot of it may be happening "behind the curtain" (see "Pharma Social Media Behind the Curtain"). Often, neither the pharma company nor the social media patient leader reveals the relationship. New guidelines from the FDA will NOT address this issue because the FDA is concerned only that pharma commercial speech stick to the approved labeling when discussing brand name drugs. FDA cannot, for example, regulate non-branded, disease information that pharma companies may share with patients and physicians. Furthermore, FDA cannot enforce transparency -- it has no authority over patients who are free to do and say what they like without mentioning any relationship they may have with pharma companies.

That's why I say that pharma companies MUST make known their transparency policy with regard to social media. I'm not talking about their policy for how they expect their employees to behave when engaged in social media discussions. I'm talking about policy about how the corporation will behave in relationships with patients and how they will reveal those relationships.

For example, imagine that a pharmaceutical company has invited several influential patient bloggers and social network leaders to a 2-day "conference" at a resort in Orlando, Florida, all expenses paid. The "conference" is all about diabetes and support for diabetes, but not about specific diabetes treatments. It's all about "opening up a dialogue," that sort of thing.

Like a physician author in a medical journal, should patients who receive such largesse from pharma companies be required to reveal that? If the answer is "yes," who requires it? It can't be the government. It must be what I call the pharma company's "social media transparency policy," which might state something like "We require all patients who receive money or goods in kind such as free lunches and airplane tickets and other travel-related expenses to reveal that to their readers and social media followers in an appropriate fashion."

I have revealed my relationships with pharma companies many times, but not every time I write a blog post. What I have done, however, is to update my profile by adding this statement:

"I am not a paid consultant to the pharmaceutical industry, but I occasionally get invited to speak within pharma companies or at industry conferences. For this I receive reimbursement for travel expenses and ask that any speaker fee be donated to a charity. As a publisher, I do accept paid advertising mostly from agencies that work for the pharmaceutical industry."

I think patient bloggers should have something similar in their profiles (or whatever is appropriate for their relationship with the drug industry). Patients who participate in social networks and are considered "leaders" in the community might include the transparency statement in their profiles and/or signature files as well. And pharma companies should encourage this by publishing social media transparency guidelines for their patient blogger/social media partners.

P.S.  Recently, GSK invited eight bloggers to visit its manufacturing facility to "tour the facility and learn about the role that vaccination plays in keeping adults and families healthy" (see "Opening Our Doors--Again").

At least two of the bloggers wrote about their experience (see here and here). At the beginning of each blogger's post was a disclosure. Here's what they said:

"My travel, accommodations and food (except for the bagel and an extremely necessary cup of tea) were covered by GlaxoSmithKline. They did not require me to write about the trip at all, nor did they pay me, review this post or dictate what I have to say. Which is a really impressive release of control for these folks." -- Nutgraf

I don't know who "Nutgraf" is -- life's too short to track down a name when it's not mentioned in the "about me" section of the blog -- but he/she states in her/his "A Note on Integrity":

"I review things – including books, products and advice submissions – in my own time and on my own terms. I need your input to make the advice project a success, and you can rely on me to clearly disclose my policies, protect your privacy and generally deal with you and others in an above-board manner. As for products, books, pitches or anything else of that nature, I’m a big fan of disclosure. I disclose early, loudly and often. I am easily skeezed out and want to be proud of what I do here."

Meanwhile, the other blogger (see profile here, which does not include a blanket disclosure statement as above) states at the beginning of her blog post:

"I went on a trip to Philidelphia to tour the GlaxoSmithKline vaccine plant. My flight, hotel, cab fare and meals were covered expenses. The opinions represented in this post are all mine and were not compensated in any way.This is a VERY long post, and yet I feel strongly about it and would really appreciate if you would take the time to read it in it's entirety." -- Scrutiny by the Masses

Social Media's OK Corral: Docs vs. Patients

The O.K. Corral was a site in Tombstone, Arizona Territory where a gunfight took place on October 26, 1881. In that fight, the Earp brothers and "Doc" Holliday killed some cowboys who refused to disarm.

I mention this as a analogy to what I foresee happening in the health social media realm where the conversation is not as friendly or beneficial as some pharma social media pundits would have us believe. If pharma marketers are not careful, they may find themselves in the middle of the crossfire.

I am talking about the crossfire between physicians and patients, especially with regard as to which "stakeholder" group will be more credible as hired "opinion leaders."

You probably already know all about physician KOLs ("key opinion leaders") and how pharma hires KOLs to influence doctors. I predict that in order to be effective in social media that are inhabited by patients, pharma will hire respected patients to follow the discussion and to point their followers to "key" information, which includes key Rx-related information or information that supports the benefits of Rx products (see "Some Social Media Patient Opinion Leaders Want to be Paid Pharma Professionals" and "PHARMA Co Patient Opinion Leader Programs").

This will lead to the inevitable conflict with physicians who may have different ideas as to what "key" patient information should be.

At two recent industry conferences, I witnessed what I think is the opening salvo between the two opposing camps. First, at a multi-channel pharma marketing conference that I chaired in Princeton, NJ, a physical wall was erected between a physician panel on one side of the room and a patient panel on the other side. Both were supposed to talk about what they wanted from the pharmaceutical industry. As I reported, the patients essentially wanted money and were quite forthright about it. The physicians, on the other hand, were too sophisticated to ask for money directly -- they already are getting plenty of money from pharma. They asked for technology or rather free technology such as iPhone apps.

But the conversation that hinted at the coming Social Media OK Corral Docs vs Patients struggle occurred during a patient panel at the Digital Pharma East conference (ie, "A Panel of ePatients Discuss Key Issues that Affect their Lives, Relationships and Treatment").

Part of the discussion revolved around how the "value proposition" of patient online communities was the vast amount of information available from patients that is "more accurate" than information that patients typically get from healthcare providers/physicians. That, in itself, is not surprising or dangerous. But another statement made by a patient panel member sets the stage for the coming gunfight. That statement concerned patient evaluation of specific brands. The patient said that her physician was of the opinion that all branded Rx drugs for treating her condition were essentially the same. She begged to differ and pushed for her favorite brand.

It seems that patients are more in tune with pharma's direct-to-consumer (DTC) advertising premise: one brand of insulin or ACE inhibitor is better than another brand. Usually, it's the advertised brand that's better than a competitor brand or the unadvertised generic brand.

Since Rx DTC advertising has ingrained the belief in consumers and patients that one brand of Rx is better than another, it benefits pharma marketers to use online patient opinion leaders such as those on the above-mentioned panel to influence other patients online. Once they do that, marketers are again placing themselves in the middle of the patient and his or her physician just as they have been accused of doing with mass media DTC advertising.

There is a wall between physicians and patients not only at industry conferences, but also within online communities. Patients have their communities and physicians have theirs. Unless the two stakeholders can meet online and have a dialogue, someday there will be a gunfight. Pharma marketers will continue to arm both sides. Maybe they'll get caught in the crossfire, maybe not. Time will tell.

PHARMA Co Patient Opinion Leader Programs

[Below is a blog post that someday SOON may appear on a PHARMA Co Blog such as AZ Health Connections, which recently posted a notice about "AstraZeneca And Doctor Speakers Programs" (read it here). I substituted "patient" for "physician" in the following post to illustrate a point.

In this new social media era, where there is much discussion about pharma participating in patient discussions online, there is a possibility that pharma will hire influential online patients to act as "opinion leaders" just as they have hired physicians to be key opinion leaders (KOLs). Patients have already been hired by pharma companies and their agents to troll patient sites for comments made by patients online (see, for example, "Did J&J Troll Social Media Sites to Ensure Its Motrin "Recall" was a Secret?")].

Beginning soon, news organizations will be publishing a series of stories examining the financial relationships between patients and the pharmaceutical industry. Their focus will be on payments made to patients who serve as “social media moderators” or "opinion leaders" on behalf of companies and their medicines.

PHARMA Co would like to provide our perspective on the issue by having Marie M. – PHARMA Co’s US compliance officer – answer the key questions we’ll be asked by reporters in coming years.

Why does PHARMA Co engage with patients as moderators/opinion leaders?
Marie: PHARMA Co works with online patient opinion leaders (POLs) or moderators to provide other patients online with accurate and balanced information about the use, safety, benefits and risks of our medicines. POLs have the expertise and credibility necessary to educate colleagues to ensure they have the information they need to make informed treatment decisions.

Patients ultimately benefit when they are well informed and knowledgeable about our medicines, treatment options and standards of care.

Why does PHARMA Co pay patients to participate?
Marie: It is appropriate to compensate POLs for the time they dedicate to providing information to other patients about our medicines and who act as moderators of our online discussion boards. Patients who tweet or post information online about our medicines are compensated at a fair market value based on their qualifications and the amount of time they dedicate to the task. We never pay patients in exchange as an incentive to promote our products.

There currently is NO cap on how much each POL can receive from PHARMA Co each year.

How does PHARMA Co ensure laws and industry policies are followed?
Marie: Before a POL can tweet or post information on our behalf online, they must participate in extensive training on our medicines, policies, and the laws and regulations that apply to industry-sponsored presentations. Actually, however, there are NO laws and regulations that apply to industry-sponsored tweets and posts made by patients online. But, be assured, our policies prevent the company from paying POLs in exchange for asking their physicians to prescribe our medicines or as an incentive to promote our products.

How does PHARMA Co select patient opinion leaders?
Marie: There are several criteria that PHARMA Co evaluates when a patient is nominated to be a tweeter or online poster on behalf of the company, including positions within leading online patient social networks, national patient advocacy organizations; membership in special patient opinion leader networks such as WEGO; consistent tweeting and posting records; participation in research trials; and regularly tweets or posts information online.