Most pharma companies want to be known for putting patients first, for unlocking the mystery of serious illness and for improving the patients’ quality of life. These are noble and well-intentioned goals. But they are also ubiquitous; common to most healthcare- focused organizations, and are often not based on an intimate understanding or regular exposure to the end user. In the classic client customer dynamic, there are two key players: the manufacturer/marketer/distributor and the prescriber, almost exclusively the physician. So, is the patient really first?
Consumers of healthcare, a.k.a. patients, increasingly see themselves as the preeminent advocate of their own health and this role may extend to others in their circle including a spouse, children, parents, siblings, friends and even colleagues. Therefore, it’s not difficult to see how a personal connection to acute or chronic illness can grow into activism and advocacy. Taking control over one’s condition; being aware and making informed choices is increasingly the profile of the savvy health consumer. To put patients first means accepting that at the end of the day, the patient voice is louder than you might think.
But how does that relationship work best, achieving everyone’s objectives and maintaining the integrity of the process? The principles may seem like common sense, but when applied diligently, they can make or break this kind of partnership.
10 tips to a happy Industry/Patient Advocacy Group collaboration
- Transparency is rule number one. Keeping in mind industry regulations concerning engagement, the groups need to be clear and comfortable with what each party wants to achieve through the collaboration.
- Write it down. Expectations should be straightforward and recorded in writing to prevent conflict down the road. This sets a reference point by which to measure progress.
- Define success. What is the end game? Describe what this will look like in terms of outcome.
- Soft skills. It is important to understand the inherent differences between large, professional, for-profit organizations and volunteer, community based not-for-profit groups. It should not come as a surprise that patient groups will view industry with skepticism.
- Trust. Trust is not a quick hit and must be earned over time. When it is achieved (earned) it will signal the beginning of a strong relationship and greater support.
- Listening. The patient journey is more than a drama or the content of a news release. It is why the patient or family is devoting time, not only to help their loved one, but the broader constituency of sufferers. Don’t be afraid to enter their world. This may be about business for the company, but without genuine empathy, patience and compassion you risk being seen as opportunistic.
- Messaging. The devil is in the details and the words used in getting the points across will be more important than you may think. Work together to develop messages that are real and compelling for both parties and each of the appropriate audiences.
- Training. Offer the patient advocacy group professional training and development in areas that will be relevant to the work you do together. This might include media appearance training, presentation skills; bring in speakers on public policy, market access, and best practices and show relevant case studies. Don’t discount individual and group needs to fully understand what and how things are done successfully.
- Accountability. You never want to ask or be asked about whether something was done. Set up a regular time to connect face to face as well as over teleconference to report and discuss progress. Determine how much and how often you need to communicate. Ideally appoint one individual from each group to be the key contact to avoid confusion.
- Don’t walk away when the mission is over. Far too often companies wait until they are desperate for the patient voice or endorsement before engaging with them. Successful organizations do stakeholder mapping early in the game and get to know the groups and key influencers well ahead of a need. By the same token, any good relationship cannot be turned on and off without consequence. Stay engaged at some level through a call or lunch meeting and a contribution to further the organization. And continue to provide information on your organization’s contribution in the areas of research, patient programs, awareness, corporate social responsibility and education.
Carol Levine (@Carol_levine) is co-founder and Managing founder of energi PR, digital, communications, an award-winning independently owned Canadian PR consultancy established in 1990 with offices in Toronto and Montreal. energi PR is the Canadian affiliate of the Public Relations Global Network, providing expertise in consumer and healthcare public relations to national and multinational brands. Carol is the immediate past Chair of the Canadian Council of Public Relations firms and is a 2013 Inductee in the Canadian Healthcare Marketing Hall of Fame as well as a Fellow of the Canadian Public Relations Society.