Lots of important information to start off your week, so pay attention!
My Visit to CFF
Believe it or not, prior to last Friday I had only ever been to a Cystic Fibrosis Foundation event once or twice in my life – a golf outing hosted by a family friend. It makes sense, we sort of have our own thing going on (Boomer Esiason Foundation, duh), and while we share the same goals, we approach them in different ways and generally have little interaction. I was invited to participate in a patient speaker series at the national CF Foundation headquarters, as well as take part in a number of discussions with different teams at the Foundation. If you’ve followed my blog for a while, you’d know that I’ve been both incredibly supportive of what CFF does and outwardly critical at the same time.
I think CFF is the most successful illness-based non-profit in history and Venture Philanthropy will forever change the way humanity tries to conquer disease. My criticisms of CFF revolve (mostly) around their transparency with the patient registry, patient empowerment and voice, accountability, and the current arsenal of mental health tools. I was tremendously pleased with my day at CFF. The team members were very open to listening to my feedback and provided a great dialogue about a number of topics. I think we worked very well together to, hopefully, create lasting change. Above all else, I pledged to continue to be a disgruntled patient until patient-centric leadership is the norm in our community. Here are a few of the things I want to see from CFF over the next few years:
- Open Access to the patient registry data. If that’s not possible, however, I’d like for CFF to reduce the number of barriers for patient access to the registry data. I’d also like for CFF to address why the registry isn’t open access and then listen to community feedback on the reasons given.
- I want NACFC to be patient-inclusive. Cross-infection is a unique hurdle for NACFC. For that reason, I will never attend NACFC and I encourage other people living with CF to avoid it as well, since there are usually a handful of patients who do attend. With that being said, and knowing that much of NACFC will be lived streamed this year, I want CFF to use its success with BreatheCon and follow a similar model for virtual live access to 100% of NACFC. NACFC is innately exclusive, and I think that should change. We have the technology to do it.
- I want mental health to be a priority inside the clinic. I think the mental health clinical care guidelines need to be constantly evolving, and to that end, we need the development of cystic fibrosis-specific screening tools.
- I want CFF to hold clinics accountable, and to be transparent within the process. An imbalance exists in a number of CF clinics between the patient and care team. Patients need to feel like they are on equal standing with their care teams, my recommendation was an endorsement of OpenNotes.
One of the many things I learned during my trip to CFF was that we should have access to our Smart Reports. Smart Report is a snapshot of the data you provide to the patient registry. It’s essentially a summary of your patient data.
I want to know how many of you have HEARD of Smart Report, how many of you have RECEIVED your Smart Report, and how many of you (like me) have never heard of it. I can’t say I have ever been given mine…. Below is an example of what Smart Report looks like (note this is a sample report and doesn’t reflect an actual patient):
Smart Report should be an essential part of your clinic visit. Images courtesy CFF.
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…and that’s what I’m thinking about this morning.