Patient organisations 'a major source of R&D funding'

The pivotal role of patient organisations as a driver for research into new therapies, patient services and access to care has been highlighted by IQVIA, which found that they provided $22 billion in funding over the last five years.

The data come from a recent report from IQVIA’s Institute for Human Data Science, focusing on the 3,000 or so patient organisations across the US, which collectively raised more than $62 billion over the same period.

One-third of that revenue went towards R&D grants, with around three-quarters of the remainder going towards community support programmes.

The report also highlights the growing importance of patient organisations as partners to industry, pointing out that nearly 700 deals with an estimated aggregate value of $2.4 billion have been announced between the groups and life sciences companies over the past 15 years.

Those relationships have shot up in the wake following the passage of the 21st Century Cures Act in 2016, which emphasised the need to consider patient perspectives in drug development and clinical trials, as well as recognition that patients are best positioned to provide a real-world understanding of their symptoms and burdens and the ability of treatments to mitigate them.

All told, around 75% of the disclosed deals with industry involve research funding, mostly to small and mid-sized life sciences companies and their academic partners, as well as allowing the use of intellectual property to accelerate discovery-stage and translational research.

That includes the discovery and validation of disease biomarkers that can be used to identify new biological targets, diagnose patients, guide trial recruitment, measure drug efficacy, and increase the likelihood of drug candidate success.

“A growing number of patient organisations 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,” said Murray Aitken, executive director of the IQVIA Institute for Human Data Science.

The groups 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,” he added.

For example, more than 150 registries are now run by patient organisations, of which almost two-thirds (62%) focus on rare diseases, positioning them as “custodians of data” for their communities.

That is important as the demand for clinically rich data and real-world evidence (RWE) is accelerating, needed to guide regulatory decisions, as well as reimbursement decisions that can be pivotal in accessing new therapies.

“As healthcare has become increasingly dependent on data and technology, there are exciting opportunities for patient organisations to expand the scope of their efforts into these areas and embrace a new route to fulfil their mission and help their communities,” according to the report.