PAB Members Have Both Experience in Healthcare and Patient Advocacy
October 27, 2022, London, Ontario, Canada—To enhance the patient voice in real-world studies, Pulse Infoframe, a company that specializes in real-world data (RWD) and evidence (RWE), announces the creation of a patient advisory board (PAB). The PAB held its first meeting last month.
Understanding the implications of disease in those who have been diagnosed with one or more as well as their caregivers is critical for perspective. The patient advocacy board will contribute its expertise to new product development, future innovations, and partnerships.
“We are fortunate to ask this formidable board about their views on matters that are important to patients,” says Dr. Femida Gwadry-Sridhar, Pulse Infoframe’s founder and CEO, “but also to incorporate their expertise to inform our platform’s capabilities so it encapsulates features and functions to improve patient engagement, accelerate evidence generation and ultimately foster collaboration across patient communities.”
Pulse Infoframe welcomes the following inaugural members:
- Jean Campbell is the co-founder and board member of Professional Patient Advocates in Life Sciences. She is also the founder of JF Campbell Consultants and former VP of membership development at NORD.
- Mark Dant is the chair of the board of directors at the EveryLife Foundation for Rare Diseases and the volunteer executive director of the Ryan Foundation for MPS Children.
- Dr. Stacey Feuer is the director of the health psychology department at Duly Health Care and a rare disease advocate and speaker.
- Laurence Woollard is the director at On The Pulse Consultancy and a rare disease advocate and speaker.
Daniel Lewi, head of business development and patient advocacy at Pulse Infoframe, co-chairs the PAB with Kathleen Coolidge, consultant for patient advocacy at Pulse Infoframe.
“Establishing our patient advisory board is another step in our dedication to ensuring that the patient community is always at the forefront of our work,” says Dan. “The insights gained from this meeting have shown there is still much work to be done on ensuring advocacy groups fully understand how RWD drives forward clinical studies. We are excited about the future topics we will discuss with the PAB as they help us put into practice our commitment to the communities we support with our technology.”
Learn more about the patient advisory board at https://www.pulseinfoframe.com/our-team.
About Pulse Infoframe
Pulse Infoframe is a real-world evidence generation, health informatics and insights company that provides a technology and services platform designed to extract, curate, analyze and disseminate evidence-based conclusions that improve the quality of people’s lives. Pulse Infoframe provides a full solution for registries, natural history studies and a range of other observational and regulatory grade studies. With provider relationships for patient access, Pulse Infoframe ensures that insights, evidence and publication results are disseminated across the ecosystem, including advocacy organizations, key opinion leaders, researchers, and sponsors. Learn more at www.pulseinfoframe.com.
