PatientView | Patient Groups: A seat at the pricing table

A total of 2,262 patient groups responded to the survey.

Most respondents (66.3%) came from nationally focused patient groups, followed by regional patient groups (18.2%). International and local patient groups accounted for 8.4% and 7.0%, respectively.

Source: PatientView.
Patient groups: A seat at the pricing table (2026)

Patient groups

National 66%
Regional 18%
International 8%
Local 7%

2,621 Unique
respondents

44% (1,005) of all patient groups represent patient interest to regulators.

Excluding “Don’t know”, some 44% of patient groups stated that they “Regularly” or “Sometimes” represented patient interests to drug regulators.

Source: PatientView.
Patient groups: A seat at the pricing table (2026)

44% (1005) of 2,262 patient groups surveyed

= 22.6 patient groups. Unique respondents (2,262)

How patient groups around the world interact with drug regulators

(N = 985)

72%

of respondents describe the type of interactions they have with drug regulators. A single respondent may interact with drug regulators in a number of ways.

Source: PatientView.
Patient groups: A seat at the pricing table (2026)

Regulatory partnership

53%

Institutional governance

17%

Impacting policy and legislation

11%

Evidence-based patient input

10%

Pricing and affordability advocacy

4%

Diagnosis and medicines delivery

2%

The actions and advocacy patient groups undertake to secure access to medicines that patients need

(N = 985)

64%

of respondents describe the actions and advocacy they undertake to secure access to medicines. A single respondent may undertake several different types of activity.

Source: PatientView.
Patient groups: A seat at the pricing table (2026)

Pricing and affordability advocacy

23%

Improving access pathways

21%

Impacting policy and legislation

18%

Upholding patient rights / quality of life

4%

Diagnosis and medicines delivery

2%

Evidence-based patient input

1%

Close to one quarter of respondents participate in HTA and reimbursement reviews.

23% of patient groups report participating in Health Technology Assessment and reimbursement reviews, followed by 15% attending or facilitating meetings with policymakers/regulators. Over 1 in 10 ensure representation within governmental advisory bodies.

Source: PatientView.
Patient groups: A seat at the pricing table (2026)

Participate in HTA & reimbursement reviews