Category Archives: Events

#HealtheVoices18

As you may have seen if you follow me on Facebook or Twitter, I spent last weekend at #HealtheVoices18, the yearly conference featuring amazing, passionate patient advocates living with nearly 40 different chronic conditions.
 
 
Full Disclosure: Janssen picked up the cost of travel and accommodations so I could attend HealtheVoices in Chicago. All opinions, including the ones expressed here, are entirely my own.
 
 
This was the fourth year of HealtheVoices. I was fortunate enough to attend the first edition back in 2015. I feel even more fortunate to have been a part of this year’s gathering.

The thing I really liked about HealtheVoices this year compared to three years ago is how much the patients are now a part of the program over the course of the entire weekend. In 2015, there were a few advocates sharing what they knew, and there were a few non-patients who shared what they thought you wanted to hear, but they always seemed to fall short of that somehow.

There was none of that this time around. From individuals sharing tips and tricks on Twitter engagement to some of the best patient podcasters around helping others get their own podcasts started, the weekend was really useful for me in a way that some other conferences are not.

Advocate attendees also shared their success stories surrounding specific initiatives they started after attending HealtheVoices, some after receiving grant funding from Janssen. More on that below.

There were the typical moments during meals and in the hallways where people also shared what they know, or shared their own experiences, and of course, those moments helped bond the advocates in ways that mere presentations cannot.

This was the first time I had experienced the HealtheVoices open mic night, where people who weren’t part of the original conference schedule could riff for a few minutes on whatever inspired them. I was not fantastic, so I won’t share my part… but I can tell you that Chelcie Rice killed it with his Sugar Free Comedy, and I’ll never look at the dessert selections on a buffet line the same way again. Also, in case you’re wondering, Rick Phillips is still pretty bitter about Walt Disney, and he had people rolling in the aisles as he described why Disney still owes him a vacation.

As you might imagine, the most moving moments came from people sharing their stories. I’m an empathy sponge anyway, and pretty much all of Saturday my heart was in my throat.

People shared about battling through depression and then dealing with workplace rejection as a result.

People shared about fighting their way through cancer and, as if that weren’t enough, getting an additional diagnosis on top of that.

I was reminded once again that those living with HIV and AIDS are among the strongest, fiercest, and kindest advocates anywhere.

People talked about laying in a hospital bed and wondering if they would ever be able to speak again or walk again or have anything normal in their lives again.

One of the advocates present shared that they had never been in a place where so many people had lived through so many moments where they nearly died, and how it proves that even though we may appear weak to others, our survival and perseverance shows that we’re far stronger than perhaps even we believe ourselves to be.

I’m not sure I can explain it any better than that.

Okay, back to the grant funding I mentioned earlier… Janssen, through the Community Foundation of New Jersey (where Janssen is headquartered), is providing 30,000 dollars in grant funding from the HealtheVoices Impact Fund to patient advocates who want to work on new initiatives that serve the people in their own health communities. To find out more and to apply for grant funding this year, go to
healthevoices.com/impact-fund
 
 
A few other tidbits:

– I wish I had spent more time with advocates outside of the diabetes space. I mean, I did do that, but not nearly enough. I feel like there’s a world of knowledge and camaraderie that has been left unexplored, and I get a sinking feeling in my stomach every time I think about it.

– That said, my time with others from the diabetes community was great. Time with friends I already knew like Bea Sparks, Chelcie Rice, Jenn Christensen, Corinna Cornejo, Mike Durbin, Karen Graffeo, Sue Rericha, and Molly Schreiber (who was part of this year’s HealtheVoices Advisory Panel). And time finally spent with people I’ve wanted to meet for some time, like Phylissa Deroze, also part of the Advisory Panel, and Rick Phillips. And Anna Norton, whom I almost forgot! Anna is one of the 2018 HealtheVoices Impact Fund advisors. The diabetes community is strong and left its footprint on this event.

– On a whim, I did some quick interviews during the conference with people like Bea, Chelcie, Jenn, Mike, Sue, and Lisa Deck, who is a stroke survivor and has an amazing story to tell. If I get a chance to be at HealtheVoices again, I’d love to do a lot more of this. You can find those interviews HERE, HERE, HERE, HERE, and HERE.

Care to find out more about the goings on at #HealtheVoices18? There’s a link that will take you inside every part of the conference, and you will find that HERE.

What did we all have in common? A lot. Body parts that don’t work like they should. Being treated as less than by some, many, or all parts of our global community. Having to work hard every day to turn lemons into lemonade. Or just better tasting lemons.

But the group at HealtheVoices also reinforced the fact that we’re all indomitable. We’re far stronger than the sum of what’s ailing us. We’re creative, we’re innovative. Empathy and resilience are our hallmarks. There is so much that each of us learns from each other.

And we’re teaching the world that our voices are worthy. And mighty.

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Windy City, here I come.

I’m off to Chicago, Illinois for HealtheVoices18.

HealtheVoices is a gathering of patient advocates. Not just advocates living with diabetes, but advocates living with all kinds of conditions, from cancer to IBD to MS to everything in between.

I attended the first HealtheVoices three years ago, and for various reasons, haven’t been back. This time, I’m going back to a conference that seems much bigger than it was in 2015.

That gathering back in 2015 gave me the inspiration for starting my podcast, and I’m hoping I make the same kind of connections and get the same kind of inspiration that I did then.

Here’s where I tell you that Janssen is paying the cost of travel and hotel for this weekend, and as always, opinions are entirely my own and can never be bought. See previous conference posts to see more about that.

And I promise to share my opinions on HealtheVoices 2018, hopefully some time next week. Until then, have a super weekend, follow the hashtag #HealtheVoices18, and feel free to reach out if you have any questions.

HIMSS18: Diabetes, you’re miles ahead.

Full Disclosure: the Healthcare Information and Management Systems Society allowed me to attend HIMSS18 free of charge. The Society for Participatory Medicine provided a stipend to help defray some of the costs of travel to Las Vegas for HIMSS18. All other costs, and of course my opinions, are entirely my own.

Okay, first things first. This space has been a little quiet over the past two weeks, for two reasons: 1) The power at our home was out for four days, and a day before the power came back on, I left for Las Vegas to attend HIMSS18.

HIMSS stands for Healthcare Information and Management Systems Society, and their annual gathering is the largest health technology conference in the country. How large? There were 45,000 attendees.

The exhibit space covered two floors of a fairly large convention hall. And then a couple more large meeting rooms too. Trust me, this thing was big.

The exhibit spaces included app developers and government health organizations and companies who develop software to help practices manage patient data. There were device manufacturers too, though I didn’t see any business that was specifically talking about their offerings in the diabetes space. In fact, I didn’t see any businesses or organizations talking diabetes in the exhibit areas.

The educational and information-sharing sessions were many, all day long, and covered more subjects than I can even begin to describe. The most attended ones seemed to be anything using the word blockchain. My suspicion is that most of the men in those rooms (and they were almost all men) love the term, but don’t have any idea what blockchain really is… or how it could be used for better health outcomes.

To be honest, I don’t know how it can be used for anything other than evil. Yet.

Going into the conference, I was under the impression that the patient story would be non-existent there, or nearly non-existent. I was wrong.

There were some very well presented sessions and panel discussions involving people living with chronic conditions and telling their stories as only we can do.

I was encouraged by patients and caregivers who have started organizations that are doing their best to advance the cause of compiling and sharing data with medical professionals. Think “I don’t want to have to explain every symptom I have to every doctor at every visit”.

There was a session that included Dr. Joyce Lee as a speaker, and she covered the #WeAreNotWaiting and #OpenAPS movements. There were two other speakers in this presentation who covered other subjects, but when the session was over, all of the questions were for Dr. Lee.

And that brings me to something I learned at this conference. I found out that we, in the diabetes advocacy and technology space, are often miles ahead of those advocating for people living with other conditions.

Where we can afford it, we have access to technology to better help us manage our diabetes. That technology is being delivered to smart devices. There are platforms available for people living with diabetes to upload data from multiple devices and share it with researchers and our healthcare team. When I asked a panel discussion if there were platforms like this to help those living with other conditions track their information, I was met with blank stares.

A few other takeaways from this conference:

– Interoperability was a big theme, and multiple times, a discussion point. I think we’re at the point where everyone understands its importance and what it means for care… we just need industry and healthcare organizations to up the innovation, instead of letting the fire die down after a conference or workshop.

– While there was industry, researchers, hospital organizations, and advocates all in attendance at HIMSS, I didn’t really notice much interaction between the various groups. In a way, that makes sense because you tend to be drawn to the sessions that speak to your area of focus. But I was disappointed when sessions were presented that included patient or caregiver stories, with only 30 or so people in a room that would seat a couple hundred or more.

– There was one thing that I did not experience at this conference, that is a part of just about every other conference I’ve been to. Other than a couple of brief instances, I didn’t really get to interact with anyone at HIMSS. I went to a couple of scheduled meetups that were to take place in common areas, but when I got to their locations, there was no organization, no one introducing themselves, no one saying “over here”… it was just a lot of people coming and going. I think if I attended next year, I might have more of a feel for how to connect with others.

That last takeaway was kind of a downer. Ultimately, I must say that I feel extremely privileged to have been able to attend HIMSS. I did make a few connections, I hope, that will last beyond this conference. I also learned a lot.

I don’t know how this conference has evolved over time, so I don’t know if I can expect there to be much change when the group gets together again next February in Orlando. But since we’re talking technology, and we know that the pace of change in technology is pretty fast, I think next year’s edition of HIMSS should show the organization is going in the right direction, helping to bring patients, caregivers, healthcare professionals, and industry closer than ever before.

Put these conferences on your calendar… now!

Happy New Year! Since we’ve reached the start of a new year, you might be wondering if there are events in your area that speak to diabetes, or to health care in general in 2018. If you live in my part of the world, the answer is Yes.

This is by no means a comprehensive diabetes conference schedule like the ones Christel Marchand Aprigliano used to write up. But if you live here in the USA, there are a few things you might want to mark your calendar for. Hopefully, these will get you thinking about how to further connect with the community this year:
 
 
Healthcare Costs Innovation Summit. This is an HCI-DC event, sponsored by West Health (HCI stands for Health Care Innovation). While this is not diabetes specific, I can relate that I went to one of these a couple of years ago and learned a lot.

This year’s one day event centers around what we, as a group, on this one day, can come up with in terms of innovations and policy fixes that might help slow down or reverse the rising cost of health care in America. Timely, yes?

Andy Slavitt, former acting commissioner for the Centers for Medicare and Medicaid Services, and a font of information on health care in America (seriously, follow him on Twitter) will be speaking, among others.

The best news is that the summit is free. The second best news is that it will be live and live streamed, so if you can’t get to Washington in February, you can still look in.

Healthcare Costs Innovation Summit
Wednesday, February 21, 2018 9:00 a.m. to 3:00 p.m.
Amphitheater at Ronald Reagan Building and International Trade Center
1300 Pennsylvania Avenue NW, Washington, D.C.
CLICK HERE to attend or sign up for the live stream.

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JDRF TypeOneNation Summit. The first of the JDRF TypeOneNation Summits will be taking place on January 20, 2018 (Middle Tennessee and North Florida). The summit in my state will be happening as usual on the first Saturday in March (March 3) in Bethesda, Maryland.

These are great gatherings that give those living with and caring for people with Type 1 diabetes the opportunity to learn the latest about technology and drug innovations, and interact with others from the tribe.

If you haven’t been to a diabetes event before, this is a great place to start.

CLICK HERE to find out more about JDRF TypeOneNation Summits nationwide.

JDRF Chesapeake & Potomac Chapter TypeOneNation Summit
Saturday, March 3, 2018 9:00 a.m. to 4:00 p.m.
Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road, Bethesda, Maryland
CLICK HERE for more information. Registration opens, probably, some time this week.

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Friends for Life events. Friends for Life will be coming back to Falls Church, Virginia in October of 2018. I’ll be looking forward to seeing old and new friends and learning more about a variety of topics with regard to cost, burnout, managing diet and exercise, and seeking support.

There are usually tracks for kids, teens, and adults at this gathering. If you can’t make the big FFL meetup in Florida in July, October in Northern Virginia is a very nice second option. If you live in the west, Anaheim in May is a very nice second option. If you live in the UK, Perthshire, Scotland in October is a super option. If you live near Toronto or in Niagra Falls, or anywhere else in Canada, Niagra Falls in November works pretty well too.

Friends for Life Falls Church
October 19 – 21, 2018
The Fairview Park Marriott
Falls Church, Virginia
CLICK HERE for more information on FFL Falls Church and the other 2018 Friends for Life events in Orlando, Anaheim, Scotland, and Niagra Falls, Ontario.
 
 
2018 is right around the corner. Get out your calendars and start planning! And if you have any conferences or meetups happening where you are in 2018, please let everyone know in the comments section below.

Note: the original version of this post listed the Anaheim Friends for Life event in April; the conference is actually May 4-6, 2018. Totally my fault.

Enlightened, but unknowing.

Even though it meant getting up very early on my day off from work, I was thrilled to go to Washington, D.C. last week for a diabetes town hall, co-sponsored by the Office of Minority Health at the U.S. Department of Health and Human Services, and the Office of Minority Health at the U.S. Food and Drug Administration.

The event, as you can imagine, was designed to facilitate discussion on ways to better promote diabetes prevention and care among the non-white populations in my country. I thought that was a terrific idea. After all, the prevalence of diabetes is much higher in non-whites than in whites here in the USA, yet many of the people affected are in vastly underserved communities, either due to socioeconomic reasons, location, or because their first language is not English. I get it, I thought. This is good.

But it turns out that there is still a lot I don’t know.

For instance… did you know that the prevalence of diabetes in the United States is highest among Native Americans and Alaskan Natives? At 15.1%, their risk of diabetes is over twice that of someone who looks like me. It turns out that 12.7% of African-Americans live with diabetes, and 12.1% of Hispanics do too. Only 7.4% of non-Hispanic Whites live with diabetes here.

But that’s not all. Eight percent of Asian Americans live with diabetes, but they are far more prone to being diagnosed with Type 2 diabetes at a lower body mass index (BMI) than other ethnicities. Those advocating for greater awareness among this population are touting an initiative called Screen at 23 to test all Asian Americans for diabetes if their BMI is at 23 or over.

As our presenters that day shared their data, it was clear that while I feel I’m enlightened, I really don’t know as much as I thought I knew. For instance, while there is data surrounding ethnic backgrounds of clinical trial participants, when we see a number that says “Asian”, we don’t know if the Asians in the study were of Japanese descent or Indian descent. When we see “non-Hispanic Black”, we don’t know if these are people of Senegalese or Jamaican descent. Those specifics could mean real differences in understanding the underlying data from a clinical trial.

How about this? Did you know that FDA has sponsored a Minorities in Clinical Trials campaign? The idea is to remove barriers to clinical trial participation for minorities, who, as a friend mentioned, may have transportation, job, family, or other special constraints that make clinical trial participation more difficult than it is for a lot of the majority population.

Did you know that people with prediabetes enrolled in a Lifestyle Change Program for a year under the National Diabetes Prevention Program at the Centers for Disease Control and Prevention (a mouthful… take a moment and breathe) showed, on average, a 5% to 7% loss in body weight, and had a 58% reduction in their risk of being diagnosed with diabetes? How do we promote the NDPP and its successes among states and tribal areas with vulnerable populations?

I learned a lot in this short, half day event. Here are a couple of nuggets that I heard more than once:

– We need additional data to understand segments of the various populations at risk for, and with higher prevalence of, diabetes. Subgroups of subgroups, if you will.

– Material and coaching rolled out to non-white populations need to be presented in a linguistically and culturally appropriate manner. One size does not fit all, and there is evidence that tailoring a message to its audience has a positive effect.

One of the words I heard mentioned a lot that day was disparities. The more we can reduce the disparities that exist in diagnosis; access to care, food, drugs, and devices; participation in clinical trials; and information that sends clear messages in terms that underserved populations can understand, the more inclusive we will be as a diabetes community, and the healthier all of us will be.

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