CSL Behring's Ninth Patients as Partners in Clinical Research Event in Philadelphia
CSL’s Senior Vice President, R&D Strategic Operations Deirdre BeVard attended a company sponsored patient event in May 2022 and was moved to share her experience with CSL employees. This is a re-post from an internal CSL publication.
This year at Patients As Partners, the transparency and emotion were palpable and stood strongly alongside robust content and pragmatic examples of how to better include patient insights into the work we all do.
Speakers and attendees come from all perspectives – first and foremost from patients, patient advocacy and caregiver communities. It is the “industry” event with the most input and presentations by the patients themselves that I have experienced. They are not uncomfortable with making us all uncomfortable by addressing head-on the areas where industry can and must do better. This year was no exception.
I have served on the advisory board for the past four years and have watched the conference grow in attendance and in the depth and breadth of content. This year, I went to this event as a speaker and an attendee, and I can comfortably say I took away far more than I brought. There were more quote-worthy moments than I can recount. Here are 10 highlights that resonated and will stay with me as we continue to transform the way we work.
- I was honored and humbled to moderate the patient keynote and share the stage with Karen Peterson. Karen is a stage IV triple negative breast cancer survivor and the Founder and Chief Patient Advocate of Karen’s Club. Her personal experience inspired her to help other patients of color understand the complex and skeptical world of clinical trials. Karen became her own advocate to get the care that eventually saved her life – and it was in a clinical trial. Look for more about Karen in this feature. We should all hope that in the face of a very difficult diagnosis we will be a “Karen,” – a Karen Peterson, that is.
- It was clear from the start that it was a unique gathering of people who understand the importance and the value of partnering with patients to advance therapies that are meaningful to those who need them. The sessions were informative and inspiring and it was a gift to have after-hours conversations with such a talented and committed group representing pharma, biotech, vendors, advocates, sites, regulators and patients.
- Let’s stop saying “patient at the center.” We shouldn’t all be standing around staring at a patient in the center (figuratively of course) of a trial. It’s not about doing research “to” them; it is doing research “with” them. Patients should be part of our circle and we should be jointly focused on what we are trying to do – find new and better treatments.
- We can’t just engage patients; we must engage communities. Patients live in communities where they get support and have trusted relationships. We need to work with those communities to address health disparities and improve health literacy. That helps all patients, not just those “lucky enough” to find a trial.
- On that note, why do patients have to find trials? Why aren’t we all (industry and health care) doing more to have the trials find them?
- Being site-focused is being patient focused – we need to enable health care providers to participate in clinical trials and to educate their patients on these options.
- You cannot replace a patient’s lived experience with your learned experience. Ask patients directly!
- Health literacy is an aspect we need to pay more attention to in all that we do.
- Diversity, equity and inclusion must be priorities in all of our organizations to improve health for all. There was a plea from patients to include rare disease when speaking about diversity.
- There’s nothing like in-person engagement on these topics. While I have become as comfortable as many in this remote and virtual way of working, there is nothing like in-person engagement on these topics. Health care is personal and the relationships we make with others who share our values are to be treasured.
There were high fives, handshakes and hugs … lots of hugs; real, not virtual, connections made. Pharma, biotech, vendors, advocates, sites, regulators and patients – we are all people; people who have the same goal. When we remember that, the barriers come down, experiences are shared, connections are made and the work we do gets that much better.