AADE Gets Serious About Embracing the Diabetes Patient Community + Peer Support

The American Association of Diabetes Educators (AADE) is remaking itself in recent years, under new leadership that's far more "plugged in" to patients' real challenges and new technologies/online activity than ever before. 

This professional org, historically focused inward on the careers of its ~14,000 members, has come into the spotlight of patient advocacy in recent years with the growing recognition that these folks are on the front lines of diabetes care, as their role is to offer PWDs practical real-world advice.

Thanks to some key individuals -- notably 2016 AADE president Hope Warshaw, new 2018 president Donna Ryan, and CEO Charles Macfarlane -- the org is getting serious about embracing peer support and collaborating with the DOC (Diabetes Online Community).

They've recently taken three important steps to make this a reality:

  • Revamping their National Standards to emphasize that "peer support paired with diabetes self-management
    education and support (DSMES), is an important tool to improve diabetes care outcomes"
  • Creating a Technology Workgroup to evaluate platforms and apps, and eventually launch a portal for its members (about 60% holding the Certified Diabetes Educator credential) to browse and review apps they may want to recommend to patients {disclaimer: I am part of this Workgroup - more on that soon}
  • And just this past week, issuing a Special Report titled, "Educators and Peer Support Communities: Working Together for the Good of People with Diabetes" that details their goals and collaboration ideas

We the Patients

This report is the result of a big brainstorming session AADE held at its Chicago headquarters in mid-October of last year. Seven of their leaders hosted a group of nine representatives of PWD communities, including myself from DiabetesMine, Cherise Shockley of DSMA, Christel Aprigliano of DPAC, Anna Norton of DiabetesSisters, Alice Moran of the diaTribe Foundation, and more.

Some may argue that this "selected" group of advocates does not sufficiently represent the whole diabetes community, and that is certainly true. But believe you me, we've all worked very hard to earn our seat at the table, and we did our very best to represent patients' needs, challenges, and frustrations -- all of which are outlined in the report.

We even made the point about broadening representation repeatedly ourselves, prompting the AADE to include the statement, "One of the outcomes of the meeting was the realization that the term DOC (Diabetes Online Community) was not an accurate descriptor for groups represented. Each of the groups used a variety of methods to engage with their audiences, including in-person meetings. Therefore efforts will be made to transition to the name Peer Support Communities (PSC)."

Goals and Barriers

"The group was asked to look beyond current restrictions and constraints in order to visualize what an ideal relationship might look like between DEs (diabetes educators), PWDs, and PSCs," the report notes, with the aim to achieve: 

  • A shared view of the role of diabetes educators and peer support, and the value it provides,
  • Complete awareness between and amongst PWDs, PSCs and DEs,
  • Complete and free flow of information comparing formal practices vs. reality between DEs
    and PSCs,
  • True, deep and meaningful collaboration.

    The report includes a whole section on Barriers & Constraints, that mentions things like potential legal risk for the org or its members in interacting with patients online, and what constitutes “medical advice," i.e. defining the boundaries of offering information vs. providing specific medical guidance online.

    The report also includes a list of the overall Top 13 obstacles and issues that need addressing. Hopefully you can tell how candid all of us PWD reps were by the items on that list, such as mutual lack of awareness and perceived value of PWDs and educators, fear of being judged, and patient shaming. We also talked a lot about a lack of “internet literacy," or familiarity with online tools by many on both sides of the fence.

Do the Right Thing

Under Principles & Guidelines, a list was compiled to "build on a bedrock of agreed values" that essentially represents a kind of manifesto for how these groups should collaborate:

  • The best interests of the PWD is our highest priority
  • We will maintain a culture of empathy, compassion and understanding
  • We will maintain a culture of respect, trust and remain non-judgmental
  • Each party will own its actions and responsibilities
  • Each party will diligently and consistently follow the guidelines and principles
  • We will consistently work with, and share, best practices. We will not suppress information
  • Medical advice shall not be provided by unqualified persons nor in inappropriate settings

"It cannot be overemphasized how important it will be for the partners to adhere to these principles," the report states.

Here's the rub, of course: "The DOC" is totally decentralized. It's a freewheeling place including any number of individuals and groups doing their own thing in the diabetes space. So we -- the handful of advocates who were on hand to advise -- clearly cannot sign on for everyone in the community and guarantee that they will adhere to these guidelines.

BUT (a big but :) we can certainly encourage our peers to be mindful of these principles of decency and respect. If we patients want to be taken seriously and have our voices heard, we need to behave like well-mannered grown-ups. That's the way I interpret these principles anyway.

Detailed Action Plans

Importantly, the report lays out detailed next steps and specific actions that both the involved Peer Support Communities (PSCs) and AADE itself should take.

We PSCs are mainly asked to help promote this effort, and encourage our peers to also pledge their support of the seven Principles & Guidelines mentioned above.

Other than that, the most impactful thing we're asked to do is help create a "Speaker's Bureau of people with and affected by diabetes who can engage with diabetes educators and speak to the value of peer support in quality of life with diabetes." This would ideally be a diverse group of individuals/leaders who can attend diabetes-related events and professional meetings/programs to help represent the community. We're also asked to "encourage involvement of diabetes educators in events and programs hosted by PSCs." All good ideas, IMHO.

For its part, AADE is signing on to do a lot of work to better promote the benefits of peer support, including more training for its members on PSC activities and online channels; identifying and publicizing gaps in research on peer support (especially where lacking for T2D); and offering its CDE members incentives to help fill those gaps, "including potential funding but also 'soft' benefits that reward people in terms of fame/career/reputation."

Very soon, AADE will be rolling out a whole new "Peer Support" section of its website, including videos and downloadable resources. As a start, they've already created and posted a two-page handout to inform CDEs about what's available to patients in the online community. Click here for the color version and black-and-white version of these helpful flyers.

A New Era of Patient Peer Support

After fighting for years to get healthcare providers to recognize the value of patient communities and online networks, this is just really good news! We can only hope that other orgs giving professional advice to physicians -- like ADA (American Diabetes Association), AACE (American Association of Clinical Endocrinologists), and AAFP (American Academy of Family Practitioners) -- get religion on peer support, too.

We have to give AADE kudos for making a 180-degree turnaround and becoming a champion of this cause. Especially since at the second-ever Diabetes Advocates Summit back in 2010, the org seemed one of the most clueless -- at the time, sending a PR spokeswoman to speak who obviously had no idea how important diabetes educators are to patients, let alone how important PWDs are to each other.

Today, AADE is leading the way on embracing this new era of patient empowerment and peer support. And we're happy to help in any way we can.

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Originally published at DiabetesMine on Feb. 8, 2018


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