Dramatic changes in U.S. healthcare over the last few years have forced a rethinking of the partnerships pharmaceutical companies form with groups representing patients and families. Public Relations Group interviewed dozens of patient advocacy organizations to understand how they view the changes and what they seek from their pharma partners.

Partnerships between patient advocacy groups and pharma companies play a unique role in assuring that new medications arriving on the market meet the needs of people with devastating diseases. To both sides, these relationships bring value. For advocacy groups, partnerships provide both capital and information about treatments in the pipeline that may have life-or-death implications. Drug companies gain a window onto the patients’ desires, their interactions with doctors and insurers, their willingness to participate in clinical trials and whether they will go to bat for a new drug when it comes to reimbursement and formulary placement.