This is a long overdue post of the next session from our Society’s first conference on October 25. The first keynote, about OpenNotes, was posted here, including this note:
WOW was our Society’s first conference on October 25 a breakthrough event! Titled “Participatory Medicine: Transforming the Culture of Care” (web page), it produced a storm of attention on Twitter (our #SPM2017 hashtag had 15 million impressions in 48 hours, 1.1 million per hour during the event!) and a tremendous boost in awareness of our movement. Importantly, new relationships were formed at our event and our table at the Connected Health Conference, to which we were attached. It was a great and exhilarating outcome for our first-ever conference; our partnership with PCHAlliance (Personal Connected Health Alliance) was highly effective for all involved.
Opportunities and Challenges in Patient Experience: What’s Next?
On this blog yesterday Mark Sullivan’s post is a perfect setup for this session. Titled “Who gets to define the clinical problem?”, he points out that while medicine can diagnose, only the patient can say what the real problem is in their life. If medicine doesn’t solve that, the job didn’t get done.
That’s just one aspect of participatory medicine in patient experience. This panel has terrific anecdotes and program news from several leaders in patient experience, and then, as often happens, the juicy part comes during Q&A. Panelists:
- Barbra Rabson, CEO of Massachusetts Health Quality Partners (MHQP, Twitter @MHQP, which has been )
- “We have to be careful, because the healthcare system has a perspective about what engagement is, and it’s not the same as what patients’ engagement is.”
- “I think the payment system has to get thrown out before this gets fixed – because the incentives are skewed. Sometimes they’re skewed to give you inappropriate treatment.”(!)
- “Dignity takes people treating other people like people – and that takes time. … the bonus is that if you fix this, you’ll fix clinician burnout, too.”
- Grace Cordovano PhD (@GraceCordovano) – Cancer Patient Advocate, CEO of Enlightening Results, SPM member
- “There are so many stories that are bad and wrong – I wish there was a repository of positives that we could all turn to and say ‘Oo, this works!'”
- Pat Folcarelli RN, MA, PhD – VP, Silverman Institute for Health Care Quality and Safety, Beth Israel Deaconess Medical Center
- “[Ten years ago] We were segregating the patient experience from the quality work. … then it evolved, when we realized ‘False distinction!’ These groups need to be one quality / safety / experience group.”
Moderator is SPM board member Sue Woods MD, MPH, currently founder of health startup Nudg.
Around 41:53 see the Q&A from Tom Delbanco, co-creator of OpenNotes, about the work that’s been going on since the 1980s. He wants patient feedback posted publicly for each individual clinician.
He’s followed by SPM board member-at-large Peter Elias MD, with a story that resonates strongly with that post yesterday on the importance of realizing that only the patient can say whether they’re better yet. Barbra Rabson replies with a spot-on story from a clinician friend in Minnesota.
Thanks to all our panelists, and to those who asked the questions that pulled it all together to show the real patient impact.
Your system is light years agead of ours in Georgia. Here we aren’t even having this conversation and patients aren’t included in the design of the facilities’ operations. I had a horrendous patient experience and I tried every possible form of conflict resolution with the system where I had all my doctors but they made it clear that they didn’t value me nor my input and were only interested in maintaining their image.
My case was the prime example of everything that is wrong in the healthcare system; total mismanagement of my care, disrespect, repeated incidents of gaslighting, doctors making fun of me, nurses yelling at me to go someplace else while I had a severe E-coli infection, supervisors not returning my calls, their “Patient Relations” person asking me pointedly “Why would a doctor do that?” when I reported the physical abuse by an on-call-neurologist in the ER and then by his resident, the complete and utter destruction of my doctor/patient relationships, libel written and repreated in my electronic record by several doctors, failure to treat my Dysautonomia, threatening letters sent to me, and a complete cover-up by the corporation which ended in my being officially “globally terminated” from ALL their clinics statewide.
I was discounted and humiliated in every way and then retaliated against for exercising my rights to file official grievances (all of which were dismissed out of hand because I discovered that all the regulatory agencies follow the same model of investigation; namely that they base their investigation SOLEY on what is written in the records (written by the very people under investigation). All they did was parrot back to me the blanket denials and refusals to take any responsibility by the individuals involved.
Now I am working on changing the law on the federal level. I and another patient started a petition sent to HHS to close the loopholes which currently allow this type of total disrespect of patients to continue. The petition currently has more than 700 signatures and the number of personal accounts continues to grow. I would love to collaborate with and hear from other like-minded people in order to get real change/improvement implimented this year.
Please read the petition and feel free to sign it and also to add your story to it if you have one yourself (or one about someone you love); https://www.change.org/p/stop-power-hungry-doctors-from-bullying-gaslighting-and-blacklisting-their-patients?recruiter=371789340&utm_source=share_petition&utm_medium=copylink