Relationships are important in rare—and so are reputations. Rare disease communities are often small and closely knit. Patients and caregivers rely on each other for advice, opinions, and support. They are with each other in the trenches, both online and offline, and they forge deep bonds based on shared experience, trust, and commitment to each other’s well-being.
As a pharmaceutical marketer, you are part of this community, which means you will be held to the same high standard. It also means that if you do something to jeopardize the trust that has been placed in you, the news is likely to be shared.
There is something to learn in this regard from The Corporate Reputation of Pharma in 2013, a global survey of 800 patient groups, conducted in November-December 2013 by Patient View. When asked to rate the reputations of multinational pharmaceutical companies, only 35.4% of respondents gave this sector a “good” or “excellent” rating. Of the 8 healthcare sectors included in the study, pharma companies came in 7th in terms of reputation. Biotechnology pharma companies came in 6th (40.6%) and for-profit health insurers came in 8th (26.7%).
Some factors that influenced the ratings were pricing policies, transparency, integrity, and management of adverse event news, all of which can either build or diminish patient trust. Pharma’s poor showing relative to other healthcare sectors is not news. But what is surprising is that Patient View found that the pharmaceutical industry’s reputation has declined. In 2011, 41% of respondent patient groups said the pharma industry had an “excellent” or “good” reputation.
What can you do to keep your company’s reputation in the “good” to “excellent” camp?
The movement to bring patients into the discussion about clinical trials—and bring them in early—has its roots in a growing desire to understand the whole patient and caregiver experience. Showing empathy and respect for the opinions of all community members demonstrates positive intent and creates relationships based on mutual trust.
A number of pharma companies have made headlines recently by creating platforms that allow for more data sharing. The issue is a complicated one. Many patient groups and researchers see data sharing as a pathway to speeding treatment development. But from the pharma company’s perspective there are legal and privacy issues to grapple with. Companies that have been willing to work to overcome the hurdles have earned the goodwill of the communities they serve. Sharing clinical trial data— even when it is disappointing— demonstrates integrity, especially when it is matched with authenticity and a real understanding of the human lives behind the data.
Be in it for the long haul
Belonging to a community means having a consistent presence. Launch and leave is not an online strategy that will win patient and caregivers’ support. If you’re going to create a website or a social media presence, make sure you’re committed to updating it, adding new information, offering useful resources, and continuing the dialogue. Engage with patients and caregivers by seeking to understand and meet their unmet needs and support the initiatives that matter most to them. Be there for the community and you will earn that excellent reputation you seek—and keep the one you have.
Photo courtesy of David Wright on Flickr