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
05 Oktober 2023 - 2:00PM
Business Wire
- 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
Patient organizations play a vital role in the U.S. 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.
Nonprofit patient organizations have existed for more than 100
years and now number in excess of 3,000 in the United States.
Following the passage of the 21st Century Cures Act in 2016, there
was a seismic shift in the role and contributions that patient
organizations make in collaboration with life sciences companies to
develop novel therapeutics consistent with the recommendations of
the U.S. Food and Drug Administration (FDA).
“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.
“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 U.S.:
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.
- Deals with life sciences companies: Nearly 700 deals –
commercial and non-commercial, including research grants – have
been publicly announced between patient organizations and life
sciences companies over the past 15 years, with an estimated
aggregate deal value of $2.4 billion. About 75% of the disclosed
deals involve providing research funding, mostly to small and
mid-sized life sciences companies and their academic partners, as
well as allowing the use of their intellectual property to
accelerate discovery-stage and translational research. Many of the
multi-stakeholder deals – collaborations involving multiple
companies or organizations – focus on discovering and validating
disease biomarkers. Nearly half of all deals between patient
organizations and life sciences companies over the past decade have
focused on neurology, where there are several large patient
organizations – including The Michael J. Fox Foundation for
Parkinson’s Research, Muscular Dystrophy Association and
Alzheimer's Drug Discovery Foundation – that have been particularly
active in funding research.
- 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.
- Financial trends: Over the past five years, the
aggregate revenue of patient organizations exceeded $62.5 billion
and the largest 20% of patient organizations accounted for 92% of
this revenue. While overall revenue grew by 26% over the period,
only the largest patient organizations have seen revenue growth on
average since 2016, while numerous smaller patient organizations
experienced a contraction in revenue. The impact of the COVID-19
pandemic was seen in 2020 – the most recent years for which
financial information was available. Contributions – including
grants received – represent a steady 80% of patient organization
income, while more than a third of all spending is given as grants
and about three quarters of other expenses support programs. Over
the past five years, patient organizations have contributed $22.2
billion in grants to support patient services, research and access
to care, including nearly a third given to individuals by groups
primarily focused on financial assistance.
- The future of patient organizations: Patient
organizations will continue to play a vital role in supporting
further research on behalf of their communities, which includes
leveraging new technology trends that bring great promise to
accelerate cures and other therapeutic advances. Shared post-market
surveillance platforms may also hold particular promise for future
collaborations between patient organizations and life sciences
companies to build robust information on diseases and their
treatments – especially for rare diseases that may currently have
nothing in place. AI/ML and wearables are creating new
opportunities to benefit patient communities, offering to make
trial participation and care easier for patients. A number of
internal processes and external actions are essential to ensure
successful collaborations between a patient organization and a life
sciences company — whether they focus on community programs,
research or data. Learning from success cases of other
organizations can advance these collaborations for the benefit of
all patients.
The full version of the report, including a detailed description
of the methodology, is available at www.IQVIAInstitute.org. The
study was produced independently as a public service, without
industry or government funding.
About the IQVIA Institute for Human Data Science
The IQVIA Institute for Human Data Science contributes to the
advancement of human health globally through timely research,
insightful analysis and scientific expertise applied to granular
non-identified patient-level data.
Fulfilling an essential need within healthcare, the Institute
delivers objective, relevant insights and research that accelerate
understanding and innovation critical to sound decision making and
improved human outcomes. With access to IQVIA’s institutional
knowledge, advanced analytics, technology and unparalleled data,
the Institute works in tandem with a broad set of healthcare
stakeholders to drive a research agenda focused on Human Data
Science, including government agencies, academic institutions, the
life sciences industry, and payers. More information about the
IQVIA Institute can be found at www.IQVIAInstitute.org.
About IQVIA
IQVIA (NYSE: IQV) is a leading global provider of advanced
analytics, technology solutions, and clinical research services to
the life sciences industry. IQVIA creates intelligent connections
across all aspects of healthcare through its analytics,
transformative technology, big data resources and extensive domain
expertise. IQVIA Connected Intelligence™ delivers powerful insights
with speed and agility — enabling customers to accelerate the
clinical development and commercialization of innovative medical
treatments that improve healthcare outcomes for patients. With
approximately 87,000 employees, IQVIA conducts operations in more
than 100 countries.
IQVIA is a global leader in protecting individual patient
privacy. The company uses a wide variety of privacy-enhancing
technologies and safeguards to protect individual privacy while
generating and analyzing information on a scale that helps
healthcare stakeholders identify disease patterns and correlate
with the precise treatment path and therapy needed for better
outcomes. IQVIA’s insights and execution capabilities help biotech,
medical device and pharmaceutical companies, medical researchers,
government agencies, payers and other healthcare stakeholders tap
into a deeper understanding of diseases, human behaviors, and
scientific advances, in an effort to advance their path toward
cures. To learn more, visit www.iqvia.com.
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Nick Childs, IQVIA Investor Relations (Nchilds@us.imshealth.com)
+1.973.316.3828
Trent Brown, IQVIA Media Relations (trent.brown@iqvia.com)
+1.919.780.3221
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