Sleep Conference 2016: Successful patients-researcher collaborations

"The only thing that doesn't change is change itself."

Whether we are involved in the pushing, the pulling, the being-dragged, or are just being sucked along in the wake, we are all moving into the era of “patient-centered” medicine and research. As you might imagine, changes to "patient-centered" healthcare are evolving at different rates in different areas, and sleep medicine in general and sleep apnea in particular are no exception. Here's where we come in, you and us, together:

We in SAPCON are invested in shaping those changing relationships and in creating a new conversation within the field of sleep medicine and health care. In this post we would like to share some of our recent experience as patients and researchers at the annual conference for sleep medicine professionals.

Just for a little background: this conference is presented by the Associated Professional Sleep Societies (APSS), comprising the American Academy of Sleep Medicine (AASM), and the Sleep Research Society (SRS). In Denver this year and called simply “Sleep2016,” next year it will be in Boston June 3-7th.

This conference traditionally has not included patient participation. There are some perfectly good reasons for that, another topic for another post; but there has been no patient voice at all, which we find not so perfectly good. A patient panel regarding narcolepsy was part of the Sleep program several years ago, but the hopes some sleep professionals voiced for a form of ongoing annual patient-participation conversation had not borne fruit.

Yet. But...

[SAPCON attendees at dinner at Sleep2016]

...we hope to change that.

This year was different for the conference -- and the sleep community -- in two significant ways:

ONE: Patients collaborated with researchers, and together submitted two abstracts: both of them were not only accepted, but also chosen to be shared as oral presentations at the conference. (This was a terrific result not only because patients were involved, but also because of how abstracts are chosen and assigned. That’s a topic for a future post.)

Yes, you, dear readers, who so generously offer your time and effort to complete these surveys as we create them, you are helping make this conversation possible! The data for these presentations were derived directly from the surveys completed by you and other members of SAPCON on the portal. Indeed, together we are better! One abstract addressed the issue of patient satisfaction with sleep apnea treatment. The other described how long patients experienced symptoms before receiving a sleep apnea diagnosis. These are just the beginning.

TWO: Several members of SAPCON’s patient engagement panel, the PEP, attended the conference as active participants, meeting with professional society leaders, industry representatives, engaging in the research sessions, and in social gatherings.

So, a professional conference is useful for many reasons, but one of them is to provide a place for conversation amongst people with common interests. We patients are very much interested in, and invested in, participating in those conversations and are working with collegial researchers and clinicians to find common ground and ways to talk together that work for all of us.

On to a few highlights

The AASM invited us to meet with them during the conference, which made for a very interesting conversation and one we'd like to continue, and Philips Respironics, eager to hear more from patients, generously funded some participants’ attendance so we could all meet face-to-face simply to have those conversations. And several of the SAPCON members were delighted finally to meet each other in person, partner-others with whom they had been working so hard for so many months.

I’d like to share with you a few of the after-conference remarks from those of us who attended:

Andy Lowe, a patient-partner high school student, wrote:

“I was able to see the professional sleep community almost in its entirety for the first time and I greatly enjoyed it. I think from our meetings and conversations with people at the conference our aim for the future of sleep medicine is what everyone wants, but no one is sure how to achieve it with our current organizations.

"Regarding the two meetings with the AASM and Respironics, I was left with the impression that both organizations really wanted to listen and are in the process of thinking about how to use our feedback."

Jessie Bakker, one of our research-partner presenters, said:

“As part of the ‘Epidemiology and Diagnosis of Obstructive Sleep Apnea’ symposium, I gave a 10-minute presentation of data collected through the MyApnea portal looking at patient-reported experiences of delayed diagnoses in sleep apnea. I had several conversations with researchers and physicians who listened to my presentation, many of whom had interesting suggestions for future research topics and collaboration.

“The formation of a Patient Engagement Panel is still a novel idea in sleep medicine, and I had several colleagues from other institutions ask me about the nature of the collaboration, the rationales underlying patient engagement in research, and our experiences in forming the Panel. All were very interested in the idea.”

Judy Owens, a member of the SAPCON Steering Committee and a clinician-and-research partner, gave us a historical view:

“From my perspective, as a long-time attendee at the SLEEP meeting, it was incredibly refreshing to see the positive response from the attendees to the inclusion of the patient voice. I can only hope this is the first of many!”

Kathy Page, patient-partner and current Chair of the PEP, noted in part:

“The time spent with the Respironics group was amazing. I went in with the preconceived notion that they only wanted our stories to use for their benefit. I came out with a new respect for that company. I think we can do great good if they decide they want to use us or any patients to help others. They listened, had great ideas and seemed like they really enjoyed the interaction. What specifically did I take away that might help MyApnea? … a great hope for the future.

“And about the exhibit hall: This was such a wealth of information. Mostly aimed at doctors and researchers, it had so many items for non-medical treatment options that I had never heard of. This lead to the idea of a "Product Review" portion on the MyApnea website.”

Mark Hanson, another patient partner, on the SAPCON presentations and meeting with Respironics:

“…I hasten to note that the hall where Vishesh [Kapur] and Jessie [Bakker] presented was SRO, and folks were stacked like chord wood against the walls and out the door. [editorial note: the attendance at the various presentations varies, as do the size of the rooms allotted to each. This was one of the average rooms, but seemed to receive a higher-than-average audience.]

“A fascinating common element for me was that every Phillips member was either a CPAP user or had family members who were.”

And Mark, ever the storyteller, notes the modeling of proper mask fitting and its impact on the company representative:

“… Si, who demonstrated her belief that a proper fitting needs to be done reclining! More than once [she] was flat on her back on the floor of the Exhibition Hall while the tech worked to fit her for her mask. Phillips had a very pleasant staffer assigned to scan business cards; she was collecting leads. I asked her if she could guess why Si was on the floor – and she said she had no idea.

"Then she watched the process. After the fitting the staffer turned to me and confided that at the end-of- day debriefing she was definitely going to recommend that the booth henceforth be outfitted with several recliners or ideally, cots, so that patients would be better fitted than when sitting in the salon chairs they had on site.”

My own addition to these comments was, in part:

“…was disappointed to miss the presentations by Vishesh and Jessie because I heard from others that the presentations were very well received and novel, but appreciated.

"I spoke at the microphone during the Q & A times at two other presentations, and afterward had people say they thought “everyone in this room needs to hear more of this.” They were referring to patient perspective on sleep treatment.

"While trying out a new Respironics mask to use with my CPAP, I was surprised by their attempts to fit masks to people who were sitting upright in chairs. Space is at a premium in those booths, but I felt in this way patients’ needs again had come second, so I did a little “modeling” of the behavior I wished for…one of the company execs said they’d explore horizontal options for next year.

"In the exhibit hall I found a terrific, affordable, non-disposable item that eliminates my need for corticosteroid nasal sprays at night. That alone was worth a great deal. KP was right, the exhibit hall is a wealth of information for the average consumer. If you’re in Boston next year, consider visiting it!"

Nancy Rothstein, the Sleep Ambassador ® and patient-partner member of the SAPCON Steering Committee, is also a member of the NIH Sleep Disorders Research Advisory Board. At the conference, NIH had a meeting to ask for ideas for research, and Nancy noted:

"Thanks to Kathy, Si, and Mark for attending and for your comments. As those of us on the NIH Sleep Disorders Research Advisory Board develop the 2016 Sleep Plan, your input was very helpful. --Mark’s question about patients not having the background to propose the questions that can impact the design phase of the plan was astute. In fact, Chair Dr. Patrick Strollo said that Mark had “identified a gap,” one he has experienced with his involvement on 3 PCORI related ventures. He said Mark had given him "a new idea to help with patient engagement.” He thought that having a webinar or workshops with his patients would be very helpful. And then to extend that to a larger audience of patients in the development of patient centered research."

In summary

These remarks hint at the sort and quality of the initial conversations we are having with others in the sleep community. These conversations can only continue with respect, persistence, and active searching for common ground on which we can all become intrigued and enthused. One might think sleep alone is sufficient common ground! But the field of sleep research and treatment is far wider-flung than some of us had fully grasped. The dearth of patient-centered diagnosis, research, and helpful, effective treatment is wider-flung than some of the attendees had fully grasped.

We have our work cut out for us, but we all came home with encouraging experiences and will be more fully prepared for a greater conversation – next year, in Boston.

By BrainsNeedSleep on July 19, 2016 Jul 19, 2016 in Patient Stories
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PierreZzzz +1 point · almost 2 years ago

Thanks, great informative post.

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SusanR +1 point · almost 2 years ago

I was so inspired to see what a difference patient participation in a professional sleep meeting can make! I have been attending these meetings as a professional for over 20 years and this was the first time I had seen patient leaders so effectively discuss their needs to leading clinicians and researchers- and also to see what an impact this made. Its hard to find the words to describe what this group brought to the meeting--fresh ideas, passion, new questions, relevance, and so much more! Thank you, SAPCON/MyApnea patient leaders for all you do!

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bankseystheory +0 points · about 1 year ago

The internet is a powerful tool, only by using it can we learn and educate others.

It helped me to identify issues with my own children that the majority of pediatric doctors are unaware of.