Patient groups sound off about their role in health care

Author(s):

Richard Payerchin

Key Takeaways

Patient groups engage with healthcare systems at all levels, providing essential support when resources are lacking.
Over 75% of patient groups in Australia, Norway, and Portugal view themselves as vital to their healthcare systems.
92% of healthcare professionals acknowledge the importance of patient groups, though health insurance companies show less respect.
Patient groups offer services including peer support, healthcare advice, and participation in clinical trials.

New global survey tallies levels of patient group involvement in research, care delivery and more.

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Patients around the world believe they form an important part of their country’s healthcare system, according to a new survey.

PatientView, a UK-based analyst, this year launched its new survey, “Patients in Action – Tackling the Healthcare Crisis,” to gauge the status of groups supporting the people on the receiving end of medicine.

They found patient groups interact with health care systems at every level, from national policy to local delivery. The group representatives differed in their perspectives across countries and therapy areas, and they offer practical support for patients when health systems don’t have the resources to do so, according to the results.

“Many patient groups wish to be engaged with healthcare systems on a more formal basis,” said a news release about the study.

In Australia, Norway and Portugal, more than 75% of patient groups believe they are essential to those nations’ health care systems. Their work ranges from providing money for hospital equipment in Australia, to organizing hospital patient and staff meetings for better understanding in Norway, to delivering medications in Portugal.

The patient groups reported they perceive 92% of health care professionals believe the patient groups are essential to the health care systems at least some of the time. The organizations in Brazil, Greece and Canada felt most valued, according to the results. Health insurance companies ranked lowest in perceived respect with a 39% rating.

Patients also are benefiting from the groups’ efforts. In total, 78% of groups arrange peer-to-peer support groups – it’s 100% in Finland – and 78% offer health care advice. Other services include:

69% – telephone help lines
42% – drug treatment clinical trials
37% – support for patients in economic hardship
33% – health care research
32% – deliver treatment and care

The survey ran from June to August 2024 and received responses from 1,144 patient groups from 83 countries and 65 therapy areas.