Global Patient Initiatives
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 vs risk. Industry and regulatory agencies have begun to look for the best ways to engage patients in meaningful dialogue and optimize their input. With this in mind, DIA has worked diligently 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 this end, DIA has created the Patient Engagement Program to promote and enable patient participation in the medical product development process by:
- Increasing the knowledge and understanding of patient groups about key issues central to the promotion of patient-centered healthcare
- Developing the capacity of patient groups to advocate for change
- Improving alliances between patient groups and other healthcare stakeholders
- Stimulating cross-cooperation, promoting dialogue and sharing best practices
The ultimate goal of the Patient Engagement Program
is to benefit everyone suffering from a disease by ensuring that the voice of the patient is heard globally in every facet of the discovery, development, and life-cycle management of pharmaceuticals, biotechnology agents, medical devices, and related healthcare products.
Patients from across the globe and across the disease spectrum are represented, including those with diseases that affect large populations, rare diseases, diseases where there are treatments available, and diseases for which no treatment in known.
The DIA Patient Engagement Program
provides the tools needed to ensure that participants improve their capacity to disseminate reliable, objective, comprehensive, and understandable information to their constituents. They learn how to raise awareness among industry, government, regulatory agencies, academia, and the scientific community about the importance of active involvement of “patient experts”.
DIA’s global, multi-stakeholder network provides opportunities to create synergies across public and private partners, promote dialogue, and facilitate meaningful and significant change – change that has resulted in life changing and life saving healthcare innovation. What’s more, these strategies can be easily replicated for other patient-centered organizations where every individual can learn to “advocate” on behalf of the patient community at-large.
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, National Organization for Rare Diseases, Canadian Organization for Rare Diseases, National Health Council, European Patients' Academy on Therapeutic Innovation, and the International Association of Patient Organizations who have come together to ensure better healthcare for all human beings. 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. This opens the door to a two-way dialogue across the entire global healthcare community.
DIA’s Patient Engagement Program includes the following activities:
- Patient Advocate Fellowship Programs
Patient Representatives, chosen through a competitive process, attend DIA conferences to learn about medical product research and development, including where in the process their input may be practical and valuable. They take part in all facets of the event, including speaking on panels, attending sessions and town hall meetings, roundtable discussions, and networking events. Scholarships are offered for:
- Patient Engagement Community provides opportunities for patients and other healthcare stakeholders around the globe to interact in a neutral environment
- Online educational resources, trainings, and networking forums with key thought leaders and other healthcare stakeholders
- Mentoring opportunities and educational programming for current and past program participants
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.
EuroMeeting Patient Fellowship Program
US Conference on Rare Diseases and Orphan Products
Message from the Immediate-past President
“DIA has enthusiastically embraced patients and patient advocates as stakeholders, which is the aim of our Patient Fellowship programme introduced eight years ago at the EuroMeeting. But their presence at these meetings is only the first step. They have already started to follow up attending by actively participating as session speakers and chairs, and as members of our planning committees for these programmes. The DIA Board of Directors, and Regional Advisory Councils for Europe and North America, now include patient representatives and we look forward to this trend advancing into our other regions.”
Yves Juillet, DIA Immediate-past President and Founder of the Europe Patient Fellowship Programme