The rapidly evolving role of patient organisations

hands together on lap

Ben Hargreaves finds that patient organisations are providing an increasingly essential role as a linker between patients and the rest of the life sciences industry. This article outlines how the role of the organisations has changed with time, and how they are now playing a key role in research and regulatory discussions. 

Patient centricity has become a frequent topic of conversation when discussing the pharmaceutical industry and its relation with patients. Perspectives have shifted from a time when patients were expected to be compliant and passive receivers of medicine. Today, the importance of an engaged and active partner in the treatment process is understood to be crucial to how effective therapy can be, and to ensuring patients are generally happier and healthier.

Alongside the rise in patient centricity has been the growth of patient organisations. Typically, patient organisations are not-for-profit institutions that are charged with representing the interests and needs of patients, their families, and those responsible for their care. The role of patient organisations has expanded enormously in the last decade, where they now exist as an important link in the healthcare chain. Now, the responsibilities of the organisations extend from conducting their own research into diseases, to collecting and utilising patient data, to coordinating directly with pharma companies. According to IQVIA’s recent report on the evolving relationship between patient organisations and the life sciences industry, this transition has emerged as the knowledge about diseases and the patients’ role in treatment has advanced.

Broader care

In the early period of the establishment of patient organisations, the primary focus had been to provide support to individuals with disabilities or illness, often focused on major disease areas, such as cancer and addiction. As the prevalence of certain disease areas grew, the number of patient organisations that arose to aid patients in that area also expanded. The infectious disease area, for instance, has seen the growth of patient organisations set up to help in the AIDS crisis, or which have disappeared as the condition was eradicated.

With the major diseases establishing a group of patient organisations, this led to wider disease areas being supported by the creation of organisations to fill the gaps. In recent times, this has led to the emergence of many organisations aiming to help patients with rare diseases. IQVIA found that 18% of all patient organisations now focus on rare diseases. In line with targeting narrower disease areas, the discovery of disease subtypes and the importance of biomarkers led to the emergence of patient organisations specifically focused on patients with particular disease variants.

As patient organisations have grown in importance, the numbers of the organisations have also increased rapidly. IQVIA states that in the US there are now over 3,000 active groups supporting patients. This number has developed rapidly in recent years, with more than a third being created in the last decade, with the internet helping to foster communities set up to help patients, especially where support did not previously exist.

Matching scale and purpose

All of these organisations have a purpose - to help the patients in their particular disease area. How they do that has changed over time. There are certain core elements that have remained from the beginning: providing education and support to patients, voicing patient perspectives to the relevant stakeholders, ensuring that medical and government policies protect patients, raising awareness, and advancing research into treatments and cures, among other responsibilities.

According to the authors of IQVIA’s report, during the decade between 2005 and 2015, there was a development in the ‘mission’ of patient organisations. This involved becoming more engaged in scientific research, directing what research is conducted and aiming to fill gaps in research pipelines, and supporting translational research through providing animal models and cell lines to speed up breakthroughs. As patient centricity emerged as a topic of interest for the industry, patient organisations also took the lead in helping create patient-centred care and drug development.

Today, the modern patient organisation has an even wider remit, with the financing in place to take the lead on research and clinical trial efforts. Another part of this has meant adapting to modern technology to make use of patient registries and databases to support trial recruitment, improve disease understanding, and support research partnerships. Beyond this, the continued emphasis on the importance of the patient voice has allowed organisations to engage with regulatory authorities, to broaden patient involvement in the drug development process, and to encourage diversity and inclusion initiatives within research.

The links with pharma companies

The research by IQVIA found that US patient organisations are generating a significant amount of annual revenue. Nearly a third of organisations (29%) earn between $1m and $10m in yearly revenue, with a further 6% earning more than $10m. IQVIA published that, over the past five years, the aggregate revenue of patient organisations exceeded $62.5 billion. The revenue generated was not spread evenly among the patient organisations, but was instead concentrated in the top 20%, which received 92% of the sum. Of this revenue, $22 billion was provided to support patient services, research, and access to care by the organisations.

Financial links between patient organisations and life sciences companies are becoming more established, with nearly 700 public deals with an estimated value of $2.4 billion having been secured in the last 15 years. Receiving money from life sciences companies is not without controversy, as it calls into question the potential neutrality of a patient organisation that provides impartial advice to patients or the public. However, rather than being dependent on life sciences companies, the primary source of income for patient organisations is generated through contributions, representing 80% of all revenue. A further 12% of revenue is derived from the programmes that are run by the patient organisations themselves.

IQVIA authors state, on the potential conflict of interest between pharma payments and patient organisations, “In recent years standing ethics committees, donor-recipient databases, written organisational conflict of interest policies, and other strategies to increase transparency on sources of revenue have been used. These help to ensure accountability, transparency, and the warranted trusts of both parties by their constituents.”

Building a future for patient organisations without an overreliance on pharma funding will likely come from building infrastructure that is able to keep them at the cutting edge of aiding patients. This means taking action to build out patient registries and platforms, where analytic research can be undertaken and insights can be delivered from the data generated. By taking such action, patient organisations can play an important role within the life sciences, and potentially receive funding without a risk for conflict of interest. “Overall, making collaborations successful between patient organisations and industry will benefit all stakeholders, enabling them to drive research and clinical trials forward and improve the lives of patients together,” the authors conclude.