This is the final installment of our interview with the Drug Information Association (DIA) about the their Patient Advocate Fellowship Program. To read part one of this two-part series, click here.
How can the contacts made at DIA help patients and their organizations, as well as the clinical R&D industry? Would you mind sharing an example of how this collaboration is helping to advance the industry?
What could be more frightening for a parent than having a child with a life-threatening illness for which there is no treatment? Or knowing that a treatment in another country is not available to your child because of its potential risks? As patients, parents, and caregivers, we all want to have a voice in deciding what risks we are willing to take for a potential treatment for chronic, debilitating or life-threatening diseases. Yet patients, the ultimate stakeholder in the journey to bring medical innovations to market, often have very limited influence in the process.
At last year’s Annual Meeting, one of the Patient Fellows spoke at a media event about the rare disease she and her daughter suffer from. This interaction resulted in a connection with an industry representative, followed by an introduction to a regulatory agency representative, which in turn led to access to a drug to treat their disease that previously was only available in Europe. This collaboration was a “game changer” for her family and 31 other patients in the U.S. with this disease who are now receiving treatment for the first time in their lives.
How can the industry collaborate more effectively with patients to ensure their voice is heard?
The patient is becoming the primary driver behind drug discovery and development, access to drugs, and healthcare policy. Patient input has begun to have a growing influence on the design of clinical trials, endpoints/outcomes, and weighing of benefit versus risk. Industry and regulatory agencies have begun to look for the best ways to engage patients in meaningful dialogue and optimize their input.
Validating the patient perspective empowers patients to take a more active role in their own medical care, which in turn strengthens patient confidence in the medical system. Establishing relationships with patients through transparent two-way communication is essential to building trust and increasing patient participation in the clinical trial process. By partnering with patient organizations, the medical and scientific communities can reach out to targeted patient groups while educating them about the research process.
Are you seeing new trends or are there new technologies making collaboration possible?
DIA joins forces with other global professional associations, including, but not limited to the Food and Drug Administration, European Medicines Agency, European Organization for Rare Diseases, and the National Organization for Rare Diseases. DIA also collaborates with the World Bank, Gates Foundation, Patient Centered Outcomes Research Institute, Clinical Trials Transformation Initiative, and the new FDA Patient Network to facilitate conversations between all stakeholders and explore practical approaches to collecting meaningful input about key issues central to patient-centered health care such as personalized medicine, comparative effectiveness research / health technology assessment, risk-benefit management, supply chain integrity, and drug shortages.
With all the technological advances occurring at such a rapid pace today, it is becoming quicker and easier to integrate the patient voice into drug development and clinical trials and with it an intimate understanding of the impact of disease on people. Industry needs to continue to harness the power of technology - email, apps, instant messaging, web conferencing, EMR, EDC, Big Data, PROs - to bring the patient voice to the fore front and ensure the perspective and experience of patients contributes meaningfully to the important work of drug discovery.
The ultimate goal is to give the patient a voice, to ensure the patient perspective is heard, and to provide vehicles for patients to convey their messages and offer their invaluable opinions while finally having a “seat at the table.”
To learn more about the Drug Information Association’s Patient Advocate Fellowship Program, you can read more here.