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A Patient at the AACVPR Annual Meeting: My observations, questions, and perspectives on the future of patient engagement in CardioPulmonary Rehabilitation

 

I had never been to Charleston S.C. and thanks to a great call with outgoing president of AACVPR (Tom Draper), I was on my way to learn, grow and hopefully contribute to the annual meeting.  

 

I checked into the registration desk and was pleasantly greeted by the staff and had a chance to briefly discuss my story of why, as a patient, I had come to the conference. 

 

As I walked around the meeting rooms at the very impressive and easy to follow way-finding signs, I did wonder to myself... What if there were intermixed on signs photos of real patients whose lives had been changed by the great work that the staff attending this conference had done at their local facility?  Would they benefit from knowing how much people like me were grateful, if they were reminded by the photos and stories on why there work matters?  Would it reinforce the meaning and purpose of their daily work? 

 

Opening Night Reception:  As I strolled around the exhibit hall with my cranberry  juice and soda water, I was impressed with new technologies and perspectives on how companies were partnering to improve cardiac and pulmonary rehabilitation programs.  I was able to talk to a number of vendors to hear their stories of why they are in this work.  I did wonder... should their be more stories on the impact of vendors on patients like me?  Should their be patients who are with these vendors able to talk about why this piece of equipment or new technology had made the difference in their overall health and recovery?  What would the impact of patients be if they were in the exhibit hall with the vendors?    

Day One: I woke early from the AirBnb I had reserved and drove to the conference anxious to learn and participate actively in the sessions.  I mistakenly had thought there might be coffee in the exhibit hall, but finding none, I had to quickly find some fuel for my brain for the day.  :)

 

I had met a few individuals at the evening reception the night before and had connected with my colleagues from the University of Michigan where I have been doing some work to show my gratitude to this team.  I looked forward to seeing each session from my vantage point as a patient and bringing back more ideas to this team.

 

The opening remarks showed a video of the last year's accomplishments-- which were both numerous and impressive.  I wondered (and ultimately suggested to the board) if in the future there would be more power to the accomplishments of the association if there was a patient story provided (or even a patient sharing the stage about their experience live)?

 

It made me wonder... would the staff be helped by seeing that there commitment to continue their education and to come to learn about new innovations in this field was ultimately to the benefit of the patients that they work with daily?  Might it make a difference?  

 

When the subject of awards was raised in the opening remarks, it made me wonder... would there be a benefit of having a patient driven award given at AACVPR for "staff member of the year"-- someone to acknowledge at the annual meeting who patients had nominated and voted on? Might their also be a "patient or patient group" award that would acknowledge the role that patients have in increasing awareness of the benefits of cardiac and pulmonary rehab?  Might this renew the fact that CR/PR are some of the most patient-centered teams that exist at any hospital or health center?  

 

As I listened to the keynote by Professor Risa Mish, I was pleasantly surprised to see her unique role of actively engaging the audience.  From naming to taming, to other ways to build resilience, I could see how this would be helpful both for the the caretakers and to give to patients in their programs?  I wondered-- did staff members listening to the keynote think of ways that the exercises might be adapted to their patients?  Might there be ways to break down some of the barriers of patient/health care team to have both staff and patients attending a session together showing how we all benefit from resilience training? 

 

A few additional highlights for me on day one included meeting Janet Wright from the Million Hearts Initiative and being invited to join, as a patient, this ambitious and important goal.  I'm grateful for the new opportunity to join and provide another patient voice to this endeavor.  

 

As I continued to learn about everything from smart phone enabled "home-based" cardiac rehab, to listening to my U of M friends and colleagues' presentation about the role of "LEAN" programs that actively engages the patient voice, I came away impressed with the evidence, data and innovation that is possible to increase utilization of rehab programs. 

 

It also had me continually thinking, what if there were a small group of patients who were meeting and discussing what we were learning?  How might this group be able to share their insights with presenters, with the leadership of the organization, or with those being educated in the audience?  What questions might they raise that would shift the perspective of the room and provide an opportunity to look at things in a new way?   (See my other blog for my questions and ideas) 

Day Two: 

 

Having enjoyed some of the history of downtown Charleston with friends I had met at the conference, and having some phenomenal local cuisine (who knew that I would like fried quail legs or something called perloo), I woke energized and ready to learn on day 2.  

 

To be frank, I wondered about the morning keynote thinking that Kathy Berra's presentation might be a bit dry and far too "specialized medical jargon" for a patient to understand or figure out ways to apply.  Well, as usual, I was wrong.  This was a great session where I learned about a number of studies that help to reinforce what we are learning about patients and I could see many ways to see ways that this information could be helpful for patients in cardiac rehab to learn about. 

 

I wondered... How might these studies and the great work of this organization be put in "plain language" and put up around all CR/PR facilities so that patients could passively be nudged to learn why what they are doing is going to help them individually to thrive in their post-rehab lives?  

 

I next attended Dr. Oh's cardiac college session.  What a compelling and entertaining speaker with a program that is helping to "go to school for their heart."  The diversity and scale of his program was truly impressive.  My only question was what would have been the impact had he had one of his patients to present at a national level on what it meant to "co-create" curriculum together?  How might this affect others in the audience to see ways in which patient voice could be instrumental in improving and co-creating new innovations and ideas for their programs?  

 

Next I had the great fortune and pleasure to meet with many members of the leadership of the conference and the association.  Having begun this crusade to be a patient advocate for the work of the association, I introduced ways to further engage patients as partners in increasing awareness and utilization.  From work that could be done "on the hill," to work that could be done to solve "relatively small" issues together at local facilities, to work that can be done in philanthropy, to ideas to change the way to engage patients at the conference, I was extremely impressed with the willingness of the leadership team to listen and act.  I remain hopeful that we will find ways to partner together and be the first of many associations that recognize and mobilize the current movement to authentically engage patients in this work. 

 

 

:) 

 

Day 3: Have to leave early... :( 

 

Unfortunately the "cheapest airfare" that I could get had me leaving early on Saturday and thus I had to miss the program on Saturday.  There were a number of sessions that I think are worthy of seeing that day and I'm hopeful there will be ways that I can see and hear about sessions that would continue to reinforce both the learning and the powerful voice of patients.

 

As I reflect on my time in Charleston... the following questions remain on the forefront of my brain: 

 

What if there were more patient presenters with the staff?  How might a group of patients be able to reach a broader audience on what is being offered at AACVPR for the staff to learn?  How might their reach on social media and with other friends be helpful in spreading the great work that is happening as the national conference and in local facilities? How might AACVPR leverage the powerful voices of patients to increase their reach?  How might we harvest the best ideas of patients to change/improve CR/PR? 

 

Overall I remain grateful for the opportunity to attend the annual meeting and remain hopeful that patients can become authentic partners with CR and PR teams.  I'm confident that the role of grateful patients is vastly underutilized to help many of the challenges that exist both in local facilities and in national movement to continue to increase awareness and improve utilization... together... I'm confident we can start a movement-  Won't you join me?  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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