We learned a lot on Day 1 of the Patient and Health Advocacy Digital Summit. Keep reading below for three key lessons, or
catch up on the live blog.
1. Patients’ stories and data are crucial to better health outcomes.Throughout the day, panelists agreed: the patient perspective is key to better health outcomes.
Health equity means the entire patient community’s voice is heard—“pre-clinical to commercialization,” as well as in front of policymakers, said Tonya Winders, President and CEO of the Allergy & Asthma Network.
By sharing their stories, and especially providing data, patients become a resource, and the FDA and industry will come to them for information, said Patrick Wildman, VP of Advocacy & Government Relations for the Lupus Foundation of America.
This can lead to tangible improvements in health outcomes. Richard Pops, Chairman and CEO of Alkermes, Inc., gave an example during a panel on ovarian cancer. Patients agreed they preferred intravenous medication to oral, because intravenous medication is administered by a health professional who’s sure to give appropriate dosage.
“Those are the types of insights that you’re probably not going to figure out just by being the smartest person in the room, you actually need to interact with the patient groups,” he said.
2. COVID-19 showed us that there are new ways of conducting trials and involving patients.During the pandemic, Global Blood Therapeutics (GBT), which develops innovative sickle cell treatments, had to pivot to understand how people could continue to participate in clinical trials safely, said Kim Smith-Whitley, MD, GBT’s EVP and Head of Research and Development.
This has led to a greater understanding of how to improve clinical trials beyond the pandemic.
“We’ve had to move a lot of our outreach and education programs to virtual platforms,” said Meghan Gutierrez, CEO of the Lymphoma Research Foundation. The result was the involvement of a more diverse range of patients who better represent society. They plan to maintain this practice.
COVID-19 initiatives, such as vaccine administration and programs to address hesitancy, have also provided additional opportunities to “meet patients where they are” and educate them about the clinical trial process, added GBT’s Smith-Whitley.
3. Health equity requires diversity in the health care workforce.
We need to improve diversity among health care providers in order to provide “compassionate, culturally sensitive patient care that’s delivered in a respectful manner,” said GBT’s Smith-Whitley.
This starts with STEM education.
Gutierrez’s Lupus Foundation gives grants to encourage students from underrepresented communities to investigate careers in science.
“We know when patients see themselves reflected in their healthcare team, they feel more confident,” Gutierrez explained.
GBT is also participating in mentorship programs for young people striving for a career in the sciences.
It can start even younger, said The Hill’s Editor-at-Large Steve Clemons, by actively engaging children in science through interactive storytelling.
Catch up on everything on the PHAS Live Blog.
Plus, a few must-reads on agriculture and the environment…
The Hill (Opinion): In reconciliation, climate-smart agriculture and forestry is the way forward
“These practices are easily one of the most cost-effective and sustainable ways to simultaneously combat the climate crisis, restore our soil and water, preserve biodiversity and build a better, more resilient future for generations to come. Climate-smart farming including regenerative agriculture and other conservation practices pull carbon out of the atmosphere and store it under the soil’s surface—and have added benefits for the quality of the land,” writes U.S. Sen. Debbie Stabenow (D-MI).
American Council on Science & Health: Do we need tighter gene-editing regulations? No.
“The point of arguing that gene-editing techniques mimic natural processes isn't to assert that natural stuff is good; therefore, gene editing is also good. Instead, the point is to illustrate that inducing mutations in the genomes of plants and animals is not novel or uniquely risky. Even the overpriced products marketed as ‘all-natural’ have been improved by mutations resulting from many years of plant breeding.”
