IQVIA Institute for Human Data Science Releases New Report on Interactions Between Patient Organizations and Life Sciences Companies

Press Release
Image Credit: © FlowStudio -

Image Credit: © FlowStudio -

Patient organizations play a vital role in the US healthcare system, according to a new report from the IQVIA Institute for Human Data Science, Supporting Patients through Research Collaboration: Interactions Between Patient Organizations and Life Sciences Companies. Over the past five years, patient organizations have contributed $22.2 billion in grants to support patient services, research, and access to care.

“In addition to funding research in collaboration with life sciences companies, a growing number of patient organizations are taking on more complex roles in the healthcare ecosystem, building on their original missions with the intent to advance research and address unmet needs in specific diseases,” says Murray Aitken, executive director, IQVIA Institute for Human Data Science in a press release. “Patient organizations are becoming the fulcrum for positive change in healthcare by building their own patient registries, inspiring novel trial designs and endpoints in clinical research, and promoting diversity and inclusion in clinical and population research.”

A few key highlights of the report include:

  • Role and profile of patient organizations in the US: More than 3,000 patient organizations are active across the county, with more than 1,000 created in the past decade. The disease and mission focus of patient organizations has shifted and expanded over time as well. Nearly 600 patient organizations, 18% of all, focus on rare diseases. In addition to advocating for patients’ interests and generating funding for scientific research to find cures, a new generation of patient organizations now support patients in complex and sophisticated ways that demonstrate the scientific and service-delivery expertise they have built. As an example, more than 150 registries are now run by patient organizations, of which 62% focus on rare diseases, positioning patient organizations as custodians of data for their communities.
  • Areas of collaboration with life sciences companies: Constructive initiatives between patient organizations and life sciences companies have been created when the mission of the patient organization overlaps with a company’s area of focus and investment. These collaborations occur in particular areas, such as understanding disease and patient experience of disease, improving outcomes through the development and optimized use of medicines, and strengthening patient communities through education, advocacy and innovation. Such collaborations have evolved further, as the regulatory changes set in motion by the 21st Century Cures Act of 2016 are expanding the role for patient organizations as partners to life sciences companies who are looking to better incorporate patient views in drug development. Overall, patient organizations describe their engagement with life sciences companies as both fruitful and challenging.
  • Involvement in clinical development: FDA guidance over the past several years on patient-focused drug development and real-world data has opened new opportunities for patient organizations to play a more significant and collaborative role with life sciences companies in the pursuit of new treatments and cures across all phases of clinical development, including trial design, recruitment, and regulatory submissions. Similar initiatives have been undertaken by the European Medicines Agency to ensure the systematic incorporation of the patient voice throughout drug development and associated evidence generation. An important area for inclusion of the patient voice is the use of patient reported outcome measures in clinical trials, which has increased over time with as many as 27% of Phase III oncology clinical trials including them in 2019. Furthermore, patient organizations increasingly work together with life sciences companies to create novel measures that better reflect disease symptoms and the improvements patients value in how they feel or function.

The full version of the report, including a detailed description of the methodology, is available at The study was produced independently as a public service, without industry or government funding.


Patient Organizations Gave $22 Billion in Grants for Research, Patient Services, and Access to Care Over the Last 5 Years, Says IQVIA Institute for Human Data Science. (2023, October 5). IQVIA.

Related Videos
Related Content
© 2024 MJH Life Sciences

All rights reserved.