Bionews Insights:
A Collaborative Approach to Better Health
A Recap from PaSAGE Deliberative event
Marcella Debidda, President of Bionews Clinical and Insights | Dec 5, 2024
As part of a broader NIH funded collaborative project – which included consortium institutions such as the Mayo Clinic, the University of Miami, the Case Western Reserve University, the University of Toronto, and UTH Zurich- Bionews was invited to join a deliberative event, a structured discussion format that brings together diverse stakeholders to explore complex issues. This event brought together ethicists, gene therapists, philosophers, policymakers, genetic counselors, patient advocacy experts, and people randomly selected to represent the general population.
Like any deliberative event, this one represented an approach to collective decision making. To kick things off, each expert took the stage to share their insights on a specific topic to help all attendees establish a shared foundation on which to start their discussion.
The event functioned like a set of concurrent focus groups, with small breakout session discussions with the main purpose to have all participants articulate and refine preferred policy options, in this case to guide the future of prenatal gene editing.
Our President of Patient Insights & Clinical Solutions, Marcella Debidda, PhD, was invited to discuss the “Role of Advocacy in Augmenting the Patient Voices” where she shared actionable solutions proposed by Bionews employees/caregivers who are advocating for more equitable healthcare for those living with rare diseases.
“In the times I have been treated as an equal, I’ve flourished. I don’t feel my feedback on a specialist or researcher’s ideas is silly and uninformed. I don’t belittle my experience because I know I am a partner with invaluable perspective.”
– Bionews employee.
Key takeaway
Consensus among participants that future gene editing policies must be guided by robust science, the diverse experiences of those with rare diseases, and shared public values.
The Power of Partnership
As we continue to advance genetic medicine and new technologies emerge, it’s critical to open up those conversations to all relevant stakeholders, including patients and the people who care for them. By fostering strong partnerships we can:
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- Design better solutions:
Co-creation with the involvement of end users from the very preliminary stages of design helps develop products and services that are more relevant, efficient, and trusted. - Enhance education for all:
Providing clear and accessible information about genetic conditions, testing options, treatment plans, ethical and regulatory considerations empowers patients to make informed decisions about their health; providing the patient/caregiver view point helps all other stakeholders to better understand concerns and priorities of those who are at the receiving end of scientific advancement. - Promote open communication:
Creating a culture of open dialogue between patients and other stakeholders fosters a sense of trust, collaboration, and shared decision-making, leading to improved patient outcomes and satisfaction.
- Design better solutions:
A Collaborative Future
By embracing collaboration and empowering patients, we can work together to build a future where genetic medicine is accessible, equitable, and transformative. Bionews is committed to advancing patient-centered care and to promoting a future where the patient voice is part of all relevant conversations.
We look forward to sharing more updates and insights as we continue to work towards a healthier future for all.
About Bionews
BioNews is a health media company focused on rare diseases and rare patient experiences. BioNews provides an insider’s view into disease and treatment news, condition management information, and community across more than 60+ chronic and rare diseases. A fierce champion of the rare voice, BioNews content is designed to reach, engage, and elevate even the smallest patient populations.