Nearly half of surveyed patient groups say they engage with drug-pricing regulators, but a similar proportion report no involvement, according to new international research.

Patient groups are increasingly involved in discussions about medicine pricing, reimbursement and access, according to a PatientView survey of 2,262 organisations across 100 countries.

The research, Patient Groups: A Seat at the Pricing Table, examines how patient organisations engage with drug regulators, health technology assessment (HTA) bodies, payers and policymakers. The survey was conducted between December 2025 and March 2026 and covered 45 therapy areas.

The findings suggest that patient advocacy extends beyond awareness campaigns and support services, with some organisations participating directly in decisions that affect patients’ access to medicines.

44% of patient groups engage with drug-pricing regulators

Of the 2,262 patient groups surveyed, 44% said they “Regularly” or “Sometimes” represented patient interests to drug-pricing regulators. However, an equal proportion reported no involvement in this activity, highlighting substantial differences in how organisations participate in pricing decisions.

The survey also found that 23% of respondents had participated in HTA and reimbursement reviews. A further 15% had attended or facilitated meetings with policymakers or regulators, while more than one in 10 reported representation on governmental advisory bodies.

HTA processes assess the clinical and, in many cases, economic evidence for healthcare interventions to inform decisions about their use and funding. Patient organisations can contribute experience of living with a condition, treatment priorities and the practical consequences of restricted access.

However, the survey measures reported activities rather than the extent to which patient-group involvement changes regulatory decisions, reimbursement outcomes or the availability of medicines.

Engagement differs between countries and disease areas

Patient-group involvement in drug-pricing discussions varied by country. New Zealand recorded the highest reported engagement among the countries highlighted in the release, at 71%, followed by Canada at 70% and Australia at 65%.

PatientView suggested that longer waits for medicine launches or access in some countries could provide greater motivation for patient organisations to engage in access discussions. The survey findings do not, however, establish that delayed launches cause higher levels of advocacy.

Engagement also varied by therapy area. Bleeding disorders had the highest reported involvement with drug-pricing regulators, at 67%, followed by kidney diseases at 62% and immune disorders at 58%.

These conditions can involve specialist care, long-term treatment or expensive medicines, making decisions about pricing and reimbursement particularly important to patients. The results identify differences in reported engagement but do not establish why these therapy areas recorded higher levels.

Research covers 35 country reports

The survey was translated into 22 languages and, according to PatientView, represented approximately 29.9 million patients worldwide.

The main report includes 35 country summaries and 26 therapy-area summaries, alongside quantitative and qualitative analysis of patient-group engagement with regulators and payers. Separate country-level and therapy-area reports are also available.

A companion analysis for pharmaceutical companies draws on 3,686 commentaries from 1,607 patient groups collected through PatientView’s Corporate Reputation of Pharma surveys between 2024 and 2026. It examines what patient organisations believe pharmaceutical companies can do to improve access to medicines and align engagement activities with patient priorities.

PatientView describes itself as an independent research company established in 2000. It says the study was funded by the company itself, with funding recovered through sales of the results to governments, regulators, payers and the pharmaceutical and medical-device industries.

The findings provide an international snapshot of how patient organisations report engaging with medicine-pricing and access decisions. Further research would be needed to establish how this involvement translates into changes in policy, reimbursement or patient access.

The overall findings are available from PatientView at www.patientview.com.