"Linking Up" Beyond Diabetes for Better Healthcare

http://type2diabetestreatment.net/diabetes-mellitus/linking-up-beyond-diabetes-for-better-healthcare/

As we begin Diabetes Awareness Month, many eyes turn to how we can "up the level" of conversation about diabetes among the general public.

To me, this month seems like a perfect opportunity to do that in part by looking beyond diabetes toward connecting with the broader healthcare community.

Two recent events were great examples of how our D-Community can and must work with other chronic health communities, establish partnerships with pharma and industry, and take awareness discussions to the next level, IMHO:

First, pharma giant AstraZeneca welcomed a group of D-advocates to their research facility outside of Washington D.C. about 10 days ago, hosting a conversation about how we can strengthen patient community-health establishment relationships and do better in reaching people who need support and help.

Then a few days later, the University of Michigan held its second MakeHealth event, an innovation forum that aims to raise the bar on how we think about changing healthcare. Here it was very clear to me that what we"ve been doing in the Diabetes Community is in fact reaching beyond blood sugars, insulin and pancreas talk to address how policy-makers and people with chronic conditions think about health challenges.

I was happy attend both these events, which opened my eyes to how we can make a difference simply by connecting dots.

AstraZeneca"s #DiabetesLinkup

About a dozen bloggers/advocates attended AstraZeneca"s get-together Oct. 22-23 in Gaithersburg, MD, with half representing people living with type 2.

You can see some of the live-tweeting that was taking place via #DiabetesLinkup on Twitter.

A big theme of this gathering was exactly as the name implied: Linking up.

One of the key discussions was AZ execs asking us what message we"d want to share among the larger diabetes community, if we could be sure to have their ear. As you can imagine, there were a range of responses -- from "You are not alone," to "Let"s represent diversity in our community," and "It"s not just about sugar or food," and so on.

The message that resonated with me was "connect the dots," as in, help people become aware of the resources available to them, and help connect people with what they need, whatever that may be.

With 29+ million people with diabetes in our country, there"s no way any one "influencer" or individual company can touch everyone.

If we try to change the world in one swoop, I feel we"re going to fail because we"re taking on far too much. Rather, let"s get into local communities where people need support the most -- churches, community centers, low-income clinics, markets, inner cities. Let"s go small, and eventually get to a point where so much change is happening locally that it can"t be ignored on the larger scale.

This approach is a little along the lines of "Think Globally, Act Locally." The diabetes problem is so huge that sweeping, generalized messages will never be as impactful as smaller, more localized communications or programs. That"s what I"d personally like to see more of.

This was just some of the great discussion that emerged at this event. Sure, AZ presented some slides on its 10 years of diabetes medications and what it has in the pipeline. And they gave us a cool tour of the research labs where brilliant minds come up with new ideas that could potentially treat disease; they represented those who translate the science into potential products, and those who actually create the foundations for new medications. Pretty cool stuff, and the theme that radiated from every single person we met: The researchers care as much as patients do about what"s going on in those labs, and when results don"t materialize or happen quickly, they are just as frustrated as we are on the patient side!

One additional perk of this DiabetesLinkup was meeting D-peep Sam Talbot, a type 1 celebrity chef, who was on hand to prepare lunch for the group. And it wasn"t just for show, as he talked about how his work connects to the bigger picture...

How can we all cook these types of healthier meals, if we"re pressed for time, money or just intimidated by complicated recipes? Sam"s response was spot-on: It"s not about a recipe, but a small change in your eating habits, that makes the difference. For example, grilling your chicken instead of frying it, using almond milk instead of higher-fat milk, or selecting healthier cooking oil and cutting back on salt -- those little things all make a difference.

And just maybe, those little changes will eventually lead to an entire food makeover in someone"s life. That"s what it"s all about!

PatientsLikeMe

Have you ever heard of the online health community PatientsLikeMe?

I first discovered it a few years ago when I was searching for support following my aunt"s diagnosis with ALS. I created a profile and put in a bit of health info, but didn"t go back much after that initial encounter. In the years since, PatientsLikeMe has grown tremendously to more than 325,000 members. But they haven"t been traditionally strong in diabetes.

That"s why their VP of Advocacy, Policy, and Patient Safety Sally Okun, spoke at the at AZ DiabetesLinkup event, during the opening dinner. She told us that of the top 50 conditions featured on PatientsLikeMe, type 2 diabetes is number 4 on the list while T1D is no. 39.

But they"ve been making inroads in our D-Community, including the recent addition of fellow T1 Christel Aprigliano to their patient advisory board.

What PatientsLikeMe is known for is not just creating a networking site for us to share those "me too" moments, but also creating a platform for patient-generated data to be used in research. They actually signed an agreement with FDA on this pretty revolutionary concept this past summer. Wow!

So often, we criticize the medical profession and researchers for focusing solely A1C and not looking at the full picture of life with diabetes. Imagine what can happen if patients start inputting comprehensive diabetes information into this platform, and sharing that with the Powers That Be.

It"s exciting that PatientsLikeMe is looking to partner up with the D-Community and help connect dots in this way!

Disclosure: AstraZeneca paid for my airfare, hotel accommodations and meals for the DiabetesLinkUp event. No one asked me to write anything, but it was assumed... since that"s what I do.

#MakeHealth at University of Michigan

A similar theme permeated the MakeHealth event at U Mich on Oct. 25-26, where innovators gathered to talk patient-centered design and how we can all work together.

We were also live-tweeting from that event, using the #MakeHealth hashtag among others.

I was fascinated to hear how the #WeAreNotWaiting mantra, first adopted a couple years ago at the DiabetesMine Innovation Summit, has become a beacon that many are looking to expand beyond diabetes.

Some see this movement, in which do-it-yourself (DIY) citizen hackers and developers are creating new tech and tools, as the wave of the future in reforming the traditional top-down healthcare system.

Of course the CGM in the Cloud movement and #OpenAPS systems have paved the way for others with different health conditions to go DIY. For example, the hearing impaired community wants to echo #WeAreNotWaiting in developing new tech, according to Susannah Fox, new Chief Technology Officer for the federal Health and Human Services (HHS) department. She sees the patient community as key to system-wide change.

Many of the #MakeHealth messages going out illustrated great patient hacks:

The point: We can"t rely (or wait) on healthcare policy-makers, device-manufacturers or medication developers to do what we want here. It"s on us to make these changes happen from the bottom up, and use our own stories and experiences to shape bigger discussions.

Connecting the Dots

What do these events have in common?

We"ve long described our DiabetesMine Innovation Project as aiming to "connect the dots" -- and it"s fantastic to see new and different forums bringing people together across the healthcare spectrum to foster new partnerships and collectively find ways to improve the system.

Whether it"s a life hack, a health blog, a new interactive platform or network, or advice on the practicalities of using a medicine -- the resources are being built, by the people who need them.

As patients, we all want our voices heard. But we can"t accomplish much as a cacophony of individual voices. Rather, we have to help the authorities, and help each other, to link up.

Still, as an individual patient there are many small things you can do to help connect the dots. For example:

• If someone feels alone, point them to some health blogs or to individuals nearby who may be able to connect and chat
• If someone has a question about a product or medication, point them to your favorite resources and forums
• When someone wonders what kind of research is happening out there and if they could become involved, share what you know to help them make a better decision

And so on...

November is Diabetes Awareness Month, but I"d venture to say that we pancreatically-challenged folk are not alone in what we want and need. So many others with other health issues face the same battles, and we all deserve what"s best for us in achieving optimal healthcare.

So, I am using November to broaden my own perspectives and #MakeHealth better beyond just diabetes.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.

Disclaimer

This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn"t adhere to Healthline"s editorial guidelines. For more information about Healthline"s partnership with Diabetes Mine, please click here.

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