Could it be that the biggest U.S. diabetes meeting of the year — focused on physicians and researchers sharing the latest medical science — has finally opened a window into the real-life struggles of us PWDs (people with diabetes)?
ADA planning committee members tell us they took special care to make sure the patient voice was included this year, and in a rare move, several sessions featured actual PWDs speaking about our perspective and what we hope our HCPs (healthcare professionals) take into consideration when doing their jobs!
In our 2014 ADA report on Tuesday, we told you about some the biggest happenings in drug and device news, plus some of the headline-making aspects of this year’s meeting (say it with us: bionic pancreas!). But outside the Exhibit Hall, there are multitudes of sessions going on in parallel, which is where most physician-attendees focus their time.
In case you were wondering (weren’t you?), ADA presentations are broken up into eight different simultaneous tracks: Acute and Chronic Complications; Behavioral Medicine (including Clinical Nutrition, Education and Exercise); Clinical Diabetes/Therapeutics; Epidemiology/Genomics; Immunology/Transplantation; Insulin Action/Molecular Metabolism; Integrated Physiology/Obesity; Islet Biology/Insulin Secretion. We can’t stress enough that most of the talks are deep science. Even those with tantalizing titles like “The Brain in the Control of Glucose Homeostasis” are hard to follow if you don’t have a PhD in molecular biology.
And here’s the thing: even the “Behavioral Medicine” track has traditionally been so research-focused that it was 50,000 feet above where patients dwell. So we’re very heartened to see new efforts to recognize the real people on the receiving end of all this science.
A number of other PWDs, both patient advocates covering #2014ADA on Twitter and elsewhere, and some HCPs who happen to be living with diabetes themselves, echoed this sentiment. One type 1 D-researcher in particular, who also has an adult T1D son who was diagnosed as a kid, mentioned to me during a shuttle bus ride that it was “refreshing” to see some of the material presented in a fashion more “translatable” to the real world, rather than just in scientific-speak and ending there. Obviously, we had many DOC’ers present this year and many of us were lighting up Twitter with our impressions of individual sessions we sat in on. For example:
— DiabetesMine (@DiabetesMine) June 13, 2014
— Jen Dyer MD, MPH (@EndoGoddess) June 14, 2014
— DiabetesMine (@DiabetesMine) June 14, 2014
— DiabetesMine (@DiabetesMine) June 14, 2014
Here’s what what our team at the ‘Mine took from a handful of Behavioral sessions we were able to attend:
- In one of the several sessions on depression and diabetes, the participating doctors told stories about how many of us in the D-Community feel shame and guilt about complications and said they’re like the “ugly relative” we don’t like to talk about. One doctor said candidly that some PWDs feel so badly about complications that they feel all they’ll be able to do if suffering from complications is “sell pencils on a street corner.” One doctor told a story about a longtime T1 who was so ashamed to talk about her vision loss that she refused to use a walking stick and ended up walking off a pier and breaking both legs. And of course that just perpetuated the cycle of depression. This panel was very clear about recognizing the connection between depression and diabetes in the context of complications, so afterward I approached the presenters to tell them about the patient-led Diabetes Hope Conference on living with complications, and how D-Advocate Scott Johnson was actually presenting at the DOC session the following day. Not sure if these endos came by, but hopefully the stories they shared resonated with the other medical professionals in the audience.
- During a session on the “Human Side of Complications,” one researcher mentioned that oftentimes, what HCPs fear for their patients doesn’t match up with what PWDs are most worried about. Dr. Rich Jackson from Joslin Diabetes Center brought the point home that HCPs tend to think about diabetes complication risk in regard to stats and big-picture medical terms, and not in terms of the person sitting in front of them. His talk was pretty insightful, telling colleagues that they too often talk about complications and overall diabetes care with a goal to scare people about risk rather than invoking action and balancing the psychosocial impact on PWDs.
- In a session on clinical study participation and patient surveys, it was interesting to hear Dr. Jeff Sloan from the Mayo Clinic talk about how they are finding that more and more PWDs don’t want to participate in longer, “blind surveys,” but rather want more knowledge and engagement with the information being evaluated. That hit home, as this is something I’ve actually written on a survey comment card myself a number of times in the past few years. In this session focused on the patient perspective, it was great to see medical pros recognizing that they can do a better job in actually listening to us rather than adopting blanket treatment plans without taking our individual needs into account. And during that session, Sloan said there’s a lot of potential in social media because it really evolves and can be adapted by each HCP and PWD for their particular situation. There was this research paper, too, shown off about the potential and current under-utilization of social media.
- Famous researcher Dr. Irl Hirsch stood up at one of the sessions on closed loop technology and made an interesting point, about balancing excitement over all the current and developing tech tools with concerns about some practical aspects of using these devices. He said that innovation and supporting science is great, but for there’s still a lot we still don’t know about these devices, like insulin pumps, that have become so mainstream. His example: infusion sets. While insulin pumping has become very widespread, and we’re now seeing one-site devices being designed, some patients are finding that long-term use of infusion sets is actually having a negative impact on their bodies. He’s found through the years that long-term insulin pumpers who’ve now been pumping for 20+ years, are taking periodic “pump holidays” and finding that MDI (multiple daily injections) actually works better because of the declining insulin absorption rates. Scar tissue is making it so the insulin isn’t being absorbed into the body as well as it once did, and that means PWDs aren’t getting as much benefit. Our friend, D-blogger Kelly Kunik has written about “dead spots” many times, and that’s something I have personally dealt with too… but it’s something the science hasn’t really looked at carefully enough, Hirsch says, and it needs more attention because this is “real life” for those who actually wear these devices.
- While we’re talking Dr. Hirsch, it was also great to hear what seems to be a larger group of experts encouraging a “beyond A1C movement” that looks past that simple average test to view glycemic variability and overall outcomes in evaluating diabetes management success. We often hear patients talking about “A1C not being everything,” but the scientific minds and HCPs have tended to cling to that measure as the gold standard. Here’s to hoping that the medical and insurance coverage mindset will expand to other outcomes measures than just A1C — for example “time in range” and some measure of patients’ psychological well-being (i.e. quality of life).
- Finally, in the DOC (Diabetes Online Community) session chaired by Korey Hood and including advocate panelists Manny Hernandez, Jeff Hitchock, Kerri Sparling and Scott Johnson, both Manny and Jeff made a point that many of us have made in the past: We’d like to see HCPs someday include online peer support as part of the prescription for anyone newly diagnosed, and at the following visit, the patient would be encouraged to discuss what they found online. Most folks in the room seemed to support that statement, and overall in numerous conference sessions you could sense how much more receptive the medical community is becoming toward online peer support. Finally, many doctors seem to recognize that it’s not prescriptive advice circulating through the DOC, but rather personal stories and psychosocial help that we need the most for all that time when we’re not sitting in the doctor’s office (illustrated by the Blue Circle above, where the little white sliver is the amount of time we typically spend with an HCP each year). But then again, you couldn’t help but overhear some HCPs who still don’t like that idea of their patient frequenting the Internet — because they might encounter bad information or scary stuff relating to complications. Online leaders Jeff and Scott acknowledged that there are some bad eggs out there of course (the Internet mirrors life!) but that most of the support is genuine and can be very beneficial, and these disease communities are very actively self-policing; if someone publishes something stupid, they get whacked pretty quickly.
We have a bunch more individual reports to bring you from the 2014 ADA Scientific Sessions in the weeks to come, so stay tuned. And of course, the Twitter hashtag #2014ADA will remain active for quite a while as we all process everything we saw and heard this year.