Pop Quiz: Who is the largest single funder of diabetes research in the U.S.? Whose acronym graces grants across the scientific board, on projects looking at everything from genetics to treatments to complications to cures?
It’s not the American Diabetes Association (ADA), and it’s not a corporation. The biggest name in diabetes research is also one of the least spoken names—the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is one of the funding institutes under the umbrella of the National Institutes of Health (NIH), along with the National Eye Institute, the National Heart, Lung, and Blood Institute, and many others.
(Full disclosure: in my day job at the University of California, San Diego, my salary as well as much of the research going on around me is funded indirectly through the NIH. So, I am by no means impartial.)
The NIDDK is the arm of the NIH that is charged with allocating taxpayer dollars toward grants that further basic and clinical research in three areas: diabetes, endocrinology, and metabolic diseases; digestive diseases and nutrition; and kidney, urologic, and hematologic diseases. As the big funder in diabetes, how much are we actually talking about here? In 2010, the NIDDK allocated a whopping $640,444,000 to projects in diabetes, endocrinology, and metabolic diseases. In comparison, the ADA’s research funding in 2010 was $33.5 million, or about 5% of the NIDDK allocation.
Further, to add a cherry on top, the NIDDK gives an additional $150 million each year strictly in grants to type 1 diabetes research as a result of a special congressional budget initiative. By way of comparison, the JDRF funded $107 million in research grants in 2010, coming in short of this one line item in the NIDDK’s budget.
So why don’t we hear about the NIDDK? Why do we see so much about what the ADA does, and what the JDRF does, and the small grants made by corporate interests, but almost nothing about the giant in our midst? Well, the NIDDK is a governmental organization, primarily composed of administrative, scientific, and clinical personalities. Their aim is to responsibly apportion out taxpayer money to further scientific research; there are a handful of patient education initiatives, but there are no sneaker drives, color-themed walks or marketing barrages. Take a look at the NIDDK website:
There is no flash and no bang—only business.
But this silent support of the diabetes community by the NIDDK has been the de facto standard for years—why am I bringing it up now? I just attended the Medicine 2.0 Conference at Stanford University, and it strikes me that the NIDDK is falling behind the health industry curve.
The Medicine 2.0 Conference was the fourth annual gathering of techies, clinicians, academics, patients, and other miscellaneous cohorts interested in the use of social media, mobile apps, and Web 2.0 technologies in health and medicine. The conference addressed a wide variety of topics, but the common thread was the analysis of how and why medical fields are incorporating new consumer technologies into practice.
From the talks presented, it was clear that doctors and academics are quickly joining the ranks of tweeters, Facebookers, and iPad gesturers. But this is not necessarily relevant to the case of the NIDDK; the NIDDK, despite receiving much input from doctors and academics, is a funding body, not a hospital. In what way could they or should they address the growing popularity of new media and means of communication?
Some insight into this question comes from the work led by and presented at the conference by Lakshmi Grama, the Senior Content Strategist at the National Cancer Institute (NCI). The NCI is, like the NIDDK, one of the component institutes of the NIH. But, unlike the NIDDK, the NCI is not unknown or unheard of in its patient communities. Here’s the NCI website:
Grama’s talk focused on the NCI’s Facebook presence, but many of the lessons could be applied to patient-focused communication in general. The NCI did not enter the social media arena lightly; Grama recounted how they “had to think very hard” about how and why to enter into Web 2.0-style communication. Ultimately, though, the necessity was made clear by concepts embedded in the institute’s core mission: the NCI is unique since part of the initial founding and funding of the organization included a “legislative mandate to communicate the results of research—it’s not just funding the research,” Grama said. As a result, Grama explained, “Our mission has always been that we need to reach the cancer community wherever they are, via the channels they choose.”* Throughout the years, this has meant letters, phone calls, and even faxes; nowadays, this means the internet and social networks that draw such a large portion of the American public.
What, though, does it mean for the NCI to “reach the cancer community”? Reach them with what? “More than anything else,” Grama said, “we want to enhance public trust in the science we fund and represent.” This goal, notably, is more than a simple desire for patient goodwill; it is an obligation in the eyes of the NCI: “We are using taxpayers’ money to fund research. They have a right to know about the progress we are making.”
So the need to enter into the world of social media was clear for Grama. The next question was how to do it. The NCI was initially apprehensive—how would they handle privacy concerns? What if patients and their loved ones asked for specific advice on treatment? And what about the many rabble-rousers in internet spaces? “One of the challenges of being in a community like Facebook is that there are people who hijack the conversation,” Grama recognized. “If someone comes to the NCI’s Facebook page and says, ‘I have a miracle cure,’ what are you going to do?”
Grama knew that it would be a mistake to try to handle these issues in an ad hoc, informal manner. “We wanted to be an authoritative voice, a trusted voice,” she said. So how could the NCI meet the cancer community where it was without stepping beyond their purview as a funding agency? Harder still, how could they maintain a dialogue without getting dragged down into the swamps of internet communities, where trolls and rumors and back-and-forth bickering rule?
To handle these fears and potential complications, Grama and the NCI created a playbook, a set of rules and policies that would govern the NCI’s entry into social media. The guidelines they came up with included that messages and posts should be timely, educational, and helpful, directing readers to resources they need. The NCI also defined a clear comment policy before beginning—“You need to be able to take down disrespectful comments,” Grama noted, but doing that consistently and without bias requires a clearly communicated policy beforehand.
On the other hand, comments that are reasonable even if unfriendly, should be allowed. “We need to allow people to express their opinions, even if they are critical of us. That’s very hard for a government agency to do,” but possible if the guidelines are established at the outset.
Crucially, though, letting people express their opinions did not require that the NCI engage in low-level bickering. “We would not carry on a dialogue that goes nowhere.” The NCI would let the conversation continue, but they would concentrate their efforts on what they knew how to do: “We provide what we’re good at providing, and that’s evidence-based medicine.”
So how has this worked in practice? To the NCI’s chagrin, data is somewhat hard to come by directly, as all the statistics are dependent upon what Facebook chooses to share. That said, the NCI’s Facebook page has over 8,000 fans and friends, and many of the referrals to the NCI’s main website come from Facebook and other social media properties.
More importantly, the NCI has seen commentary and response from the cancer community that indicates they are successfully informing and educating in accordance with their mandate, to the benefits of the cancer community, taxpayers, and thus the continued funding of cancer research.
Listening to Grama speak as a member of the diabetes community, I must admit I was a little bit jealous. Where’s the NIDDK in all of this? Who is representing my patron government agency?
When I asked how well the NCI’s experiences in social media were shared across the institutes under the NCI, Grama said that there was a lot of sharing, but each institution was adopting and adapting at its own rate, according to its own prerogatives. In the case of the NIDDK, there is a Facebook page, but it only has about a thousand fans, and lacks much of the patient interaction that the NCI seems to have fostered. Whereas it’s easy to find comments like “Thank you very much for your kind and steadfast response, which I again appreciate very much,” on the NCI page, there are no such vouchers of support on the NIDDK page. Further, while the NCI’s posts highlight new research and commentary from noted experts, the NIDDK page focuses on a rather repetitive set of fact-sheets and conference announcements. I have no problem with the occasional fact-sheet—but I’d also like to see the cutting edge, the notable news that I know so many NIDDK-funded researchers are generating, translated for the layperson as many of the cancer pieces are.
I grant that the NCI has a bit of an advantage—they have been concerned about patient information from the outset, and thus had a team of trained call-center personnel who just had to be moved toward a new technological platform. Plus, though the NCI arguably addresses as wide a biological scope as the NIDDK, the conceptual scope is more unified; we tend to think of cancers as all related diseases, while diabetes, obesity, digestive disorders, and kidney diseases don’t have a single face.
Even so, the NIDDK, like the NCI, is taxpayer funded and addresses patient communities, and I would love to see the NIDDK beginning to engage social media in the ways the NCI has. And this is not because I feel they owe patients information, or even because I feel they owe taxpayers information. I want to see the NIDDK enter the diabetes community because we all owe them a debt of gratitude for the funding they oversee, and yet so few of us even know they exist. I often hear people with diabetes complain that no one is funding diabetes research, and that no one is interested in a cure, and that’s simply not true. The NIDDK is generously funding us, and I think both the organization itself and the collective doubt of the diabetes community would be better served if we had more patient-friendly and patient-directed visibility into all that the NIDDK is doing.
I’m not asking for a chatty Twitter persona or a team of SEO experts. But, please, take a page from the NCI’s book and engage patient communities where they are, with the channels they choose, representing a clear voice of evidence-based medicine. Show us all the good work you are doing, because it encourages us as patients and helps to close the knowledge gap between the scientists and the disease communities that depend on them.
* For more on the history of the establishment of the NCI, I highly recommend Siddhartha Mukherjee’s The Emperor of All Maladies.