Overview
Learn more about how PatientView’s latest report, Patient groups: A Seat at the Pricing Table, was conceptualised and developed, explore the research approach behind the study, and where to access further information.
Key insights
Background
PatientView developed Patient Groups: A Seat at the Pricing Table to explore the essential role patient groups play in engaging with drug regulators and helping to improve access to medicines.
Relatively little is known about the extent to which patient organisations are involved in decision-making processes undertaken by regulators, payers and reimbursement bodies. For the first time, PatientView is seeking to quantify and highlight the extent and impact of patient group involvement in this area, providing greater insight into how patient groups are contributing to regulatory, reimbursement and healthcare decision making, providing policymakers, the private sector and regulators an insight into the activity and mindset of 2,262 patient groups across disease areas and countries.
PatientView is a UK-based research, publishing, and consultancy group, created out of a belief that the views of patients should be considered in all important healthcare decisions (whether a new healthcare product is being developed, or whether a government is instituting changes to a health system). PatientView has worked to build bridges worldwide between pharmaceutical companies and health NGOs that comprise the patient movement—to help define and support one of the most important factors changing healthcare in the 21st century.
Framework
The study sought to establish the extent to which patient groups represent patient interests to drug regulators, payers (including through health technology assessments (HTAs) and medical device assessments) and governmental or policy committees.
Between December–March 2026, a short survey was circulated to key patient organisations and translated into 22 languages. In total, 2,262 patient groups responded, representing 100 countries and 45 therapy areas.
Quantitative and qualitative findings were analysed to identify overarching trends and insights. Among patient groups actively engaging with regulators and payers, responses were analysed against 12 overarching goals and 39 sub-categories.
FURTHER ANALYSIS
Where sufficient responses were received for individual countries or therapy areas (14 or more respondent patient groups), the data were also analysed separately. In total, the research includes analysis across 35 countries and 26 therapy areas.
This data can be explored in detail through this website. For those seeking further insight or information, a comprehensive report is also available and can be shared upon request.
MEASURING PATIENT GROUP ENGAGEMENT
Qualitative responses from patient groups were analysed across 12 goals and 39 sub-categories, covering areas such as improving access pathways and protecting patients’ rights. As responses could relate to multiple areas, individual respondents may be included in more than one category.
The goals and sub-categories are broadly grouped into two areas: Interactions, where patient groups engage in established processes, for example by submitting evidence or representing patients; and Actions and Advocacy, where patient groups actively seek to influence policy, practice or the wider debate around a particular issue.
GET THE REPORT
Our research covers 2,262 patient groups representing 100 countries and 45 therapy areas. The sample report shows you the depth of analysis for a single country or therapy area. To access any other reports, please get in touch.
Visit patient-view.com to gather more information or email: Alex Wyke, alexwyke@patient-view.com
