New York, NY. Authenticity. It’s what our customers want from us. And, turns out, it’s what patient advocacy groups want from pharma, too. Yesterday, inVentiv Health’s Public Relations Group released a report, “The New Partnership Paradigm: What Patient Advocates Seek from Pharmaceutical Partners.” And, number one on the patient advocacy wish list: improve transparency and authenticity.
Patient advocacy groups and pharma have historically had a mutually beneficial relationship. Patient advocacy groups hold access to patients and insights, while pharma provides the resources for current support and the hope for future treatments.
According to the report, this relationship is expected to strengthen. Patient advocate groups want to be more active in the design and execution of clinical trials. They want to be involved in awareness and education campaigns for patients, healthcare providers and caregivers. It’s fitting because these are activities that will advance their mission.
On the flip side, pharma is faced with access issues and drugs that are becoming prohibitively expensive for patients, which better aligns them with patient advocacy groups that are already working for this cause politically. In addition, the growing pipeline of rare disease treatments will result in many brands seeking highly specific patient populations for trials and behavioral insights, to which patient advocacy groups hold the key.
As the relationship between patient advocacy groups and pharma gets even stronger, how can we deliver on the ask for transparency and authenticity?
They want a real commitment
“A year or two before their medication heads to generic status, the companies too often pull back from their support of the community, says Elizabeth “Eli” Pollard, executive director of the World Parkinson Coalition. In doing so, companies haven’t fulfilled their commitment to treat advocacy groups as true partners.”
They want to be consulted as experts in a therapeutic category
“The groups and their networks of volunteers know the doctors best able to treat an illness. They keep up with the research.”
They want to connect us with patients
Some patient organizations complain that social channels give pharmaceutical company funders a false sense of intimacy with patients and their support and service groups. “If pharma is going to enter into a disease space, they need to be open to hearing directly from patients,” says Christine S. Brown, executive director of the National PKU Alliance.“ They need to hear [patients’] stories and connect with them.”
They want us to keep them informed
Some advocates fault drug companies for failing to take advantage of new communication channels to provide timely clinical or pricing information on their products. Instead, drug makers often hold patient organizations at arm’s length — the opposite of what healthcare consumers expect in the age of Facebook and PatientsLikeMe.
For more insights, see the full report from inVentiv Health’s Public Relations Group.