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Institute Report
Supporting patients through research collaboration
Interactions between patient organizations and life sciences companies
Oct 05, 2023
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Report Summary

Patient organizations are critical players in the health system, focused on improving the lives of patients and their loved ones as they cope with health conditions. As life sciences companies increasingly aim to be patient-centric, they have partnered with patient organizations to better understand what patients experience along their care journey, advance research and drug development, and improve clinical trial designs to better meet patient needs. However, despite shared interests, collaborative relationships between the two stakeholders have had their challenges.

Understanding the role and perspectives of patient organizations in these partnerships can help life sciences companies forge better and more productive collaborations. As patient organizations have expanded the scope of their work — acting as expert scientific and data partners to industry — understanding the breadth of what they offer can open new opportunities for collaboration.

This report examines the different types of patient organizations, the dynamics affecting them and the activities they conduct. It explores where collaborations with life sciences companies are occurring, where they have been successful, and where patient organizations have indicated there is room for improvement. It also examines growing areas of focus for patient organizations where they may seek or provide support and collaboration.

Key findings:

  • There are more than 3,000 active patient organizations across the U.S., supporting patients through their health journeys and shaping research and care delivery.
  • Patient organizations are assuming an ever-expanding role, including developing patient registries to better understand diseases and funding scientific research to find cures.
  • The 21st Century Cures Act required changes that are expanding the role of patient organizations as partners for life sciences organizations to better understand the patient experience and incorporate patient views into drug development.
  • Nearly 700 deals with an estimated aggregate value of $2.4 billion have been publicly announced between patient organizations and life sciences companies over the past 15 years.
  • Over the past 5 years, the aggregate revenue of patient organizations exceeded $62.5 billion, with a third of that going toward grants and much of the rest to supporting community programs.

 

Other findings:

  • There are 3,327 patient organizations currently operating in the United States, with approximately 593 or 18% focusing on rare diseases.
  • More than a third of currently operating patient organizations were created in the last decade (2010s, with the peak number created in 2014 (n=195).
  • In the 2000s, patient organizations increasingly became a primary source of information for patients to understand their disease through their web sites and become aware of potential treatments, their benefits, side effects and risks.
  • The 2010s saw patients increasingly share their experiences with others on social media and in patient community chat rooms and blogs that both helped new patient organizations emerge and the importance of the patient experience to be elevated to the forefront of discussion for other stakeholders.
  • When the mission of a patient organization overlaps a life sciences company’s area of focus and investment, the two sometimes work collaboratively to accomplish shared aims or support each other’s work.
  • The aims of patient organizations and life sciences companies overlap in three major areas: advancing understanding of disease, improving patient health outcomes through the development of medicines and their optimized use, and improving health and access in patient communities.
  • To advance disease understanding they both commonly fund basic scientific and translational research (sometimes sponsoring academic research jointly or building multistakeholder research collaborations) and conduct patient-centric research to better understand patient experience and guide R&D.
  • Patient organizations act as donors — providing grants or use of intellectual property to life sciences companies or academic parties jointly — in 75% of all deals, with two-thirds of their support going to small and emerging companies, and most of the rest to mid-sized companies (see blue in chart above).
  • While most provide funding to support research, many patient organizations also have built up complex research tools and knowledge in a disease area and assist life sciences companies in the form of animal models, cell lines, discovery technologies and data.
  • To speed discovery-stage and translational research, patient organizations sometimes assemble these into research “toolboxes” to share with partners that may include assay libraries, patient bio-samples, biomarkers, biochemical and biological assays, antibodies, stem cell lines, established or novel cell or animal research models, patient data relating to genetic variants or symptoms or outcomes (PROs), and literature reviews they may have collected.
  • Across the globe, and particularly in some EU and Commonwealth countries, health technology assessments (HTA) assess whether new treatments should be made available to the population and if the cost of doing so is justified.
  • To determine this, many countries seek input from patient organizations to clarify patient and caregiver perspectives on how taking a medicine has affected their lives and ability to function, or the likelihood a new drug will improve the quality or length of life.
  • Several agencies such as NICE, CADTH and SMC seek such input in nearly all HTA submissions.
  • Aggregate revenue of U.S. patient organizations exceeded $62.5 billion over the five-year period 2016–2020 (n=3,262), giving them an average of $12.5 billion annually to support their missions.
  • Revenue grew 26% for patient organizations over the past five years, looking at the set of patient organizations with stable reporting (blue segments).
  • However, the top 20% of patient organizations among these (n=377) raised 92% of this revenue and only these largest patient organizations have seen their revenues grow on average (with increases of 5% annually) while others have seen declines.
  • As healthcare has become increasingly dependent on data and technology, there are exciting opportunities for patient organizations to further enhance their pivotal patient-centric role in healthcare.
  • There will be new opportunities for patient organizations to leverage patient-centered data by building registries and health data platforms, as well as harness new technology trends to help their communities and accelerate the search for therapies.
  • Increasingly, patient organizations are building such data infrastructure (sometimes in collaboration with industry) to conduct analytic research and are bringing forth new discoveries and disruptive insights based on data and the lived experiences of patients. They share these insights with the public, researchers, life sciences companies, and regulators to advance R&D and accelerate therapeutic breakthroughs.

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