Patient Councils – Part 2: Innovation Best Practices

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  • December 13, 2022

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Innovation is the lifeforce of healthcare. That’s true whether it’s discovering new medicines and inventing new diagnostics or expanding treatment access and thinking about how we engage with patients. 

As patient councils become a standard practice, it’s essential to sustain and transform these bodies to keep the experience fresh, engaging, and rewarding for all involved. So, as we start to think about a new year ahead, here are few ways to innovate in 2023 and beyond.  

  • Evolve with Purpose.  Innovation for innovation’s sake is pointless. Before introducing any significant changes to a council, conduct a rigorous assessment to capture insights about what’s worked and where there’s room for improvement. Seek input from both council members and internal stakeholders through a survey or, better yet, interviews, where there’s an opportunity to really listen and ask follow-up questions. And don’t miss the opportunity to pressure test any potential changes under consideration. This dialogue can lead to true co-creation among all who have skin in the game.
  • Reinvent the Structure. Councils were originally conceived as an enduring body of anywhere from six to 20 or more members who meet on a regular basis. The underlying rationale is that there’s value in marshaling an established group of patients and caregivers whose guidance informs a company’s patient engagement and clinical development activities. Given this broad remit, think more flexibly. Consider expanding council membership and introducing different “tiers” of expectation around engagement, or dividing up council responsibilities among smaller, more focused groups. For example, ad hoc opportunities such as surveys and polls go to the broader membership. Perhaps specific members are invited to be part of a task force that tackles a discrete project or issue or are invited to speak at a lunch-and-learn. Consider the most experienced patients for the deepest commitments, such as regular meetings that address business-related questions.
  • Refresh the Membership.  New members mean new perspectives. Take stock of the current membership and ask whether it represents a diverse cross-section of the patient community. Think age, gender, race, ethnicity, geographic location, disease journey, health status, education levels, and treatment experience. If there are noticeable gaps, or over-representation of certain segments, recruiting new members while others roll off (and yes, term limits are important!) will bring fresh thinking to the meetings.
  • Embrace New Technologies.  There are a range of digital tools that can make virtual meetings more interactive, stimulating, and efficient. One is GroupMap, which is a real-time online brainstorming tool that allows a moderator to gather and group responses that can be viewed and then built on by the group. Another is Scarlet Entertainment’s Virtual Mind Mapping & Scribe, tools that allows you to transform complex ideas into easily digestible drawings and stunning animations.
  • Mix It Up.  It’s easy to fall into a rut when structuring a meeting agenda. Challenge yourself to be creative in the flow and content of the meeting. Use the occasional icebreaker to warm up the virtual room. Integrate publicly available or specially produced short videos into the meeting that inform or inspire the discussion. Add variety to PowerPoints by interspersing infographics that add visual interest. Do role-playing exercises that illuminate a doctor-patient conversation or discussion of a clinical trial with an investigator. Arrange a virtual appearance by a special guest “from the field,” such as a company scientist in the lab. Hold breakout sessions that allow small groups of the council attendees to brainstorm and present ideas to the larger group.   
  • Build a “Between-Meetings” Hub.  Establishing a private web-based resource destination for members to go for information and support can keep them engaged between meetings while demonstrating the company’s deeper commitment to the patient population. For starters, the site can feature everything from disease information, backgrounders on clinical trials, information on the drug development process, a list of patient advocacy groups, informational videos or infographics, and tips of daily living that address quality of life issues that may be relevant in many therapeutic areas. To make it personal, include photos and brief bios of the members. Make the design and tone warm and friendly. Create a place they find helpful and want to return to. 
  • Location, location, location.  While most patient council meetings continue to be virtual, holding an in-person gathering each year is a great opportunity to deepen relationships and have more robust agendas. If you go this route, be creative in selecting a city that allows for a field trip to a notable place of interest. Maybe it’s holding the meeting to coincide with a relevant medical meeting and arranging for the group to gain access to a session or meet with KOLs. Or going to a city where a leading patient advocacy organization is headquartered so members can visit and meet staff. Visiting headquarters for a lab tour. You get the idea – think outside the meeting location box.  And it goes without saying, be sensitive to any mobility or other issues that impact travel or the pace of activities.
  • Amp Up the Speaker Game.  Bringing in an outside speaker can create a sense of occasion, make an impact, and inspire. Perhaps an author, clinical trial investigator, patient advocacy group leader, or even a celebrity associated with a company disease education campaign fits this bill. 

All aspects of a council are up for continued evolution and rejuvenation. Tackle them one at a time or go all in. Just be sure to work alongside your patient partners and internal stakeholders to make sure that the experience evolves in a way that continues to be meaningful and valuable on all sides.

If you missed “Patient Council Best Practices” Part 1, please visit this link.