Tag Archives: Events

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.

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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.

Friends for Life Falls Church.

Like the Energizer bunny, Friends for Life just keeps going.

I think Children With Diabetes, the organization that stages the Friends for Life conferences throughout the USA, and in the UK too (and occasionally Canada), would rather be thought of on their own, as opposed to being associated with a battery company. But that aside, after attending many of these now, I am still amazed at how they make each gathering spectacular and unique.

In Falls Church, Virginia last week, I was working the DPAC table in the exhibit space again, like I’ve been doing for a while now. That means I don’t get to get into many sessions, but I do get to see a lot that goes on around the venue. Not backstage pass kind of stuff, but things that I think help me see how much of an undertaking each conference really is.

The first thing I noticed was the update to the sessions in the schedule. More advocacy sessions with Christel Marchand Aprigliano and Stewart Perry. Cynthia Rice from JDRF and Paul Madden from ADA also jumped in here and there.

Also, there were sessions about Succeeding as and Adult and Parenting with Type 1, a Safe Zone discussion for Significant Others of adults with T1D, and two sessions for Grandparents and Occasional Caregivers. I saw a session on Your Legal Rights as a Person With Diabetes. When you’re tackling these subjects, led by smart people like Kerri Sparling, Tamara and Sean Oser, Brian Grant, and Leigh Davis Fickling, you know you’re going to learn something significant without needing a PhD to understand the subject matter.

Unlike some of the other FFL events I’ve been to, this time I was able to see a lot of the staff working in the background to keep things running smoothly. Think about everything that needs to be done: Making sure everything arrives (think T-shirts, badges, and those wonderful green bracelets). Setup and registration. Getting rooms ready with the right amount of tables and chairs, screens to view presentations, and branding material. Coordinating meals and food choices with hotel staff.

That doesn’t even count little extra touches that mean a lot. When someone at registration asked me if I had diabetes (do I get a green bracelet? YES!), then someone else asked, “Do you still have an appendix?”, it was the funniest moment of the entire weekend. I don’t know how they all remember so much.

I’m not kidding… everyone works so hard, yet makes it look so effortless. Many of the first timers I met, from Ohio and North Carolina and Pennsylvania and beyond, really appreciated how they were made to feel at home, and how accessible everyone was. How can I describe it? Friends for Life is a comfortable place where everyone feels like they belong. It’s a conference, while redefining the very meaning of that word. Friends for Life is an experience, not one time, but always.

Here’s your notice: if you live in the eastern half of the USA, you should know that Friends for Life is coming back to Falls Church, Virginia next October. If you can’t make it to the big event at Disney in July, this is a great opportunity to learn a lot, interact with others living the same life you do, and enjoy being part of the biggest group that no one wants to belong to… that just happens to be populated with the most wonderful people. To find out more, go to childrenwithdiabetes.com

Extra: You should definitely read this post by Leigh Fickling over at Six Until Me. This describes FFL maybe better than anything you’ve read above.

**Note: I get nothing for writing about Friends for Life. DPAC paid for my travel and accommodations to Falls Church, Virginia. Opinions on Friends for Life are entirely my own.

Sign up for these public meetings.

Hello…. I hope everyone’s week has been grand. For me, life has been a series of meetings and appointments and lots of work. While I have a moment, I want to let you know about two upcoming meetings that offer both educational and advocacy opportunities.

On April 26 and 27, there will be a meeting at the offices of the National Institutes of Health in Rockville, Maryland. The National Institute of Diabetes and Digestive Kidney Diseases (NIDDK) is chairing an interagency coordinating committee meeting where, in this case, they will be talking about prioritizing Type 1 diabetes research.

Like so many meetings, this one is open to the public. There will not be an opportunity to make public comments in person, but there is a way to e-mail your concerns ahead of time. Then, if you are able, you can go to the meeting and be the eyes and ears of the community, so to speak. We need that sort of thing in these forums.

To find out more, and to register, CLICK HERE.

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On May 12, there will be another public workshop at the U.S. Food and Drug Administration. This one is specifically advocacy-based. In this workshop, attendees will get direct input from FDA staff on the roadmap for approval of new drug therapies. You’ll get tips on how to make your voice heard in the approval process. And you’ll get additional information on how FDA uses the patient voice to help make informed decisions, while protecting patient safety.

This is a great opportunity to learn how the sausage is made. Metaphors! I’m full of metaphors today!

The workshop takes place at the FDA’s sprawling White Oak campus in Silver Spring, Maryland on Friday, May 12. To find out more, and to register, CLICK HERE.
 
 
That’s what’s happening near where I am… what’s going on in your part of the world?

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