Rare Patient Voice conducted a study among n=3455 patients and caregivers to gain a better understanding of their experience with Patient Advocacy groups and their thoughts about collaboration between Patient Advocacy Groups and the Pharmaceutical Industry. Some key findings include:
- There is a lack of awareness of advocacy groups which is a key barrier to working with them.
- Advocacy groups are seen as most proficient at providing information and raising awareness.
- Although a majority of patients & caregivers are in favor of partnerships between advocacy groups and pharmaceutical companies, many are unsure.
- Those who are opposed have strong feelings. They fear a loss of independence for the advocacy groups, a conflict of interest where profit motive takes priority over patient needs, and simply a feeling that drugs may not be the answer.
For complete results, please contact Wes Michael (wes.michael@rarepatientvoice.com) or Pam Cusick (pam.cusick@rarepatientvoice.com)
