by Joe Pugliese, President and CEO
“The single biggest problem in communication is the illusion that it has taken place.”
George Bernard Shaw
The Alliance just completed a very successful Physician /Administrator meeting in CA. The program was well attended, with 31 business administrators and 27 physicians. The sessions were led by Alliance staff, Alliance board members and attendees. Participants enjoyed interactive informational sessions, lots of networking, and even some fun – a trivia night and a cooking class that allowed everyone to show different sides of their personalities – as well as a 3-hour certified program from Cornell University. This conference was the first of its kind effort. We are surveying the attendees and using their responses to fine tune next year’s meeting.
We talked about a host of topics; I think the best received sessions were the interactive sessions, which allowed participants to discuss topics at their tables and report out their findings. I want to highlight one of our discussions about strategic communications with patients and families.
I had been looped into a concern of a dissatisfied mother of two boys aired on social media. As you know we live in an age where social media seemingly distorts everything in under 60 seconds. The mom was complaining about her HTC and said that suddenly the doctors were demanding visits every six months and were withholding prescriptions in the meantime. Other voices on the social media thread weighed in with their own horror stories about their physicians not listening to them.
I gave the participants at the Physician/Administrator meeting the assignment of developing a strategic approach to handling these types of scenarios – both dealing with complaints from patients and responding to hubbubs on social media more generally. The assignment generated a great deal of discussion. One group formed a debate team with one side taking the position of patient/parent and the other the provider. Another group wrote out their protocol for seeing patients and others detailed the scenarios when they would want to see a patient more frequently than once per year and how they communicate that preference/expectation to their patients.
Following the meeting, I reached out to the center that was the subject of this social media thread. It was rewarding to me that their response was immediate. They did not have protocol on why a patient should be seen more frequently than annually, and they wanted to address the mother’s concerns. It seems the news regarding the prescriptions did not come from the treatment center, but rather from a third-party pharmacy. In fairness to all parties, it is not clear when or how that communication went off track.
My goal here is not to point fingers, but rather to raise awareness for HTC providers and their patients and caregivers. Having a clearly spelled out protocol for writing prescriptions, and scheduling visits, helps everyone have the same expectations. More importantly, having clear and honest communications between everyone can help to address concerns before they make it to social media.
I encourage patients and families to feel at ease asking their HTC care team any questions. And healthcare providers, I encourage you to present yourself in a way that says it is okay to ask.
Also in this Issue…
Legal Update
· Genesis Healthcare Inc. v. Becerra: District Court Invalidates HRSA’s Patient Definition and Implementation in 340B Program
Advocacy Update
· 2025 NBPP Proposed Rule Released with Positive Policies for Bleeding Disorders Community
Member and Community Relations Update
· From Frustration to Opportunity – Maximizing HANS as a Resource
Alliance Update
· Hemophilia Alliance Resources Available to Members
· 2024 Meeting Schedules
Notes from the Community
· 2023 Unite Walk Wall of Walkers update