Highlights from the Cleveland Clinic Patient Experience Summit

The conference, in its 9th year, has a unique perspective: advancing empathy in health care.

The opening session grabbed everyone’s attention, with a 35 year old opera singer who was a double lung transplant recipient, and also a cancer survivor…plus her doctor, who wasn’t there to talk about her patient, but the physician’s own experience having a stroke (while she tried to continue doing rounds and catching up on paperwork. Doctors make the worst patients!)

Other general sessions included the founder of Death over Dinner, promoting conversations and advanced care planning (without calling it that) and the amazing story of Jonathan Godfrey, a trauma flight nurse who survived his helicopter crashing into the Potomac. The conference closed with Leilani Schweitzer, whose son died due to medical errors, and is now a patient liaison who speakers about safety culture in hospitals. Kelsie Crowe spoke about Help Each Other Out, her non-profit organization to teach empathy during tough times…to everyone.

Besides attention-commanding presentations, breakout sessions included words like holistic, joy and meaning, gratitude and fun. Phrases in the program included “hacking empathy,” “organizational grit,” “navigating uncertainty,” plus “empathy in times of suffering.” Sessions includes strategies of empathy for transgender patients, opioid addicts, difficult parents of pediatric patients and even more difficult co-workers. Multiple sessions focused on workplace culture, medical residents’ wellness groups and combatting physician burnout.

The most pervasive topic though was…caregiver burnout. CCF defines all of their employees as caregivers, so this includes physicians, nurses, admins, therapists, maintenance and food service, parking and hotel staff -- everyone. Multiple vendors, including EPIC, Microsoft and Press Ganey got a bit of scrutiny as many discussions focused on how challenging it can be to have energy for empathy when there are so many metrics to try to meet, plus tech challenges eating up the day. It’s a tightrope to walk the emphasis on technology and data as a problem solver to free up more time, while being realistic about how that actually plays out in daily practice.

One of the most compelling sessions was from a performer / doctor known as ZDoggMD, who begins as a comedy act and gets many jabs in at the “data industrial complex” that is the current trend in health care. His message was humorous and full of pop culture, skewering the dysfunctions of health care. But he also is very direct about the pain of burnout, a lack of meaningful impact in their daily work and the future of medicine should be high touch, team focused and doctor directed. Through humor, satire rap videos and his personal experience with Health 3.0 (an experimental primary care practice in Las Vegas that ultimately closed due to reimbursement issues.)

The conference itself included art therapy, self-care walking tours, lavender oil in the tote bags and healthy snacks (including little buckets of veggies.) Audio vignette sessions with patient stories were set up at multiple places with MP3 players to check out to listen, and response boards covered in Post-It notes as an interactive activity.

Overall, I found it provocative, innovative and inspiring. There are serious challenges in health care, and it’s incredibly intricate and complicated to try to know what to fix first, but rooting our efforts in the human experience will anchor us as we endeavor to help people, without burning ourselves out.

P.S. Here’s the full agenda / speakers for the conference.

Patients...Please!

I just returned from the PCORI Annual Meeting (if you don't know about this amazing organization, check it out!) which includes patients, caregivers and patient advocacy organization representatives. I also learned about the concept of Patients Included, which certifies that at least one third of attendees are patients or caregivers.  (As one health care professional who was not at the conference said to me: "Why would you do that?") 

I attend a number of professional events every year, conferences for the American Hospital Association or the Cleveland Clinic or regional health care seminars. And there's a difference. It's not just that the patients are represented -- it's that they fundamentally change the way the conversations go. They are the experts on their own conditions. They also know that a condition doesn't exist in a vacuum. Just because you have breast cancer doesn't mean you don't also have asthma. Just because you have asthma doesn't mean you don't have HIV. Just because you have HIV doesn't mean you don't have Crohn's disease. Life is complicated.

You know what else people forget? We're all patients. 

We're also almost all caregivers. We can be a patient, a caregiver AND a health care professional all at the same time! I think that for simplicity's sake we like to put everything in one box. But PCORI, remarkably, has a "check all that apply" mentality. 

That's reality. But for the non-health care professionals who attend, they bring something different -- a way of approaching things with different expertise. They don't dismiss the costs of treatment, the number of appointments to arrange transportation to or the hard work that has to happen at home for medications, dressings or physical therapy. They constantly remind everyone that the plan needs patient input or it won't succeed.

I know it's taking a long time for this to sink in...but it's happening, and I think health care will be better off for it. 

Friendliest Conference Ever? Of course -- it was about empathy!

Patient experience is close to my heart, because it's a buzzword, but it matters. I'm glad people are paying attention to how the patient views the medical experience, and not just that care is delivered effectively. 

The Cleveland Clinic's Patient Experience Summit "combines empathy and innovation," and this year's theme was Empathy Amplified.  Each presenter selected music to come on stage to and it was fun to see what they selected, from U2's "It's a Beautiful Day" to "It's the End of the World as We Know It" by R.E.M.  This set the tone for a great conference, and even though there were more than 2,000 people there, by the fourth day, I had lots of friends!

Innovation needs to be about pressing where things are bit uncomfortable and the general sessions delivered a lot of surprises. 

1. The Ostrich Index. "We ask people to operate in a self-actualized peak experience and they know they should... but they just can’t prioritize that right now. It’s not about cost, access or transportation. It may be money issues, a lack of support, conflict, stress, debt, no time to exercise, substance use, sad, not sleeping, no spiritual outlet, no sex life or caregiving demands. Stress is real." -Alexandra Drane, Eliza and Seduce Health

2. Toxic Doctors = Darth Vader. "Silence is a moral issue. Silence kills. It creates a culture that undermines safety. Darth Vaders create a toxic environment. Staff can’t breathe. This allows incompetence, shortcuts and disrespect. Inaction is an immoral act." -Dr. Wyatt, Joint Commission

3. Machines Make Fewer Mistakes. "A combination of forces approach -- care anywhere and care in teams are already hear. Care by machines? Care by large data sets? On their way. Robots don't have to be perfect, they just have to make less mistakes than humans."

Given our Darth Vaders, maybe machines would be better? I love the honesty that we may not be providing what patients (who are human) really need. They repeatedly say they want to understand what's happening to them, be involved in the decision-making process and have people be nice to them (because they are very scared.) Seems reasonable, but the giant knotted system of health care is hard to turn around. This summit was a great step in the right direction and I applaud all involved.