Patient Councils Best Practices – Part 1

Patient councils are having a moment.  Once a new innovation in patient engagement, they are now increasingly the norm among healthcare companies—and for good reason.  By establishing a council, often comprised of both patients and caregivers, our clients are establishing strong bonds with patient communities, gaining critical insights into their journey, creating more effective programs, services and policies, promoting a company culture of patient-centricity and, ultimately, improving patient care and outcomes.

While councils can weigh in on any number of topics, frequent items include: unmet community needs, quality of life challenges, input on consent forms, guidance on clinical trial protocols, feedback on educational programs and materials, and experience with existing therapies.

Whether your company is considering establishing a patient council for the first time, or already has one up and running, these best practices can help inform your planning and implementation to ensure you are making the best use of this valuable body and providing value to the participants.

Getting Started

Before establishing a patient council, ask yourself whether the company is fully committed to ongoing and open dialogue, and acting on insights shared.  If the answers are yes, here are some initial steps for launching your council.

  • Socialize Internally.  While councils are typically led by the Patient Advocacy Team, other internal stakeholders will engage with the council and benefit from their insights.  First, reach out to Legal and Compliance early for guidance on terms, compensation and contracts.  Consult with  Medical Affairs and Clinical Development to understand their top priorities, that may include gaining insights on the patient journey, protocol development, barriers and motivations to clinical trial enrollment and retention. Check in with Government Affairs to understand the policy landscape and how patient communities might support their efforts.  Ask Marketing if there are disease or treatment education tools or programs on the horizon, so you can have patients provide input early on the concept, content and format.
  • Recruit Wisely.  Before beginning the recruitment process, identify a set of criteria that will ensure you establish a council that fully represents the community and can provide the type of feedback you most need.  Aim for diversity – in age, gender, ethnicity, geography, education and disease experience.  To identify potential members, tap into relationships with patient advocacy organizations, consult with KOLs, post ads on Facebook or other platforms, ask patients themselves for recommendations or consider a portal on your company website for patients to apply. 
  • Define Clearly.  Create a Patient Council Charter that includes an overview, specific purpose, roles and responsibilities of members, membership structure, frequency of meetings and compensation.  The Charter will ensure that everyone – internal stakeholders, as well as members – understands the vision of the council and how it will operate. 
  • Contract Confidently.  In addition to the Charter, work closely with your legal team to create a contract that clearly spells out terms of membership.  A good place to start is the template developed by the National Healthcare Council (NHC) that serves as a reliable standard and can be modified based on your company’s own policies or perspectives.  The NHC website also includes a helpful calculator for determining Fair Market Value compensation rates.

Meeting Effectively

By design, councils are an enduring group that meets on a regular basis.  To make sure your first meeting – and subsequent gatherings – run flawlessly, keep these thoughts in mind.

  • Agenda Planning.  Have a clear short- and long-term vision for the council and how topics will build and progress over time. Consult with internal key stakeholders on needs and opportunities they’d like to see addressed, particularly if there are time-sensitive business decisions that could benefit from patient input.  Give thought to the sequence of topics and how one might inform the next. Also ask members to weigh in on potential topics, so they have a sense of ownership and feel valued as counselors bringing important topics to the group.
  • Establish a Bond.  The first meeting is your opportunity to make a good first impression.  It’s also the time to begin building a cohesive and collegial group environment by introducing members to each other.  Consider an interactive exercise that permits members to share tidbits about themselves:  what motivated them to join the council?  What do they hope to gain or contribute?  If they wrote their autobiography, what would the title be?  What would the reader take away as an important lesson of their life story and patient journey?  Be creative, make it fun, respect boundaries.
  • Moderate Effectively.  A successful council meeting can rise or fall on the skills and preparation of the moderator.  Having an outside, independent moderator helps create trust and brings objectivity to meetings.  Ideally, the moderator is a good listener, a time management expert, a consensus builder, empathic soul and steeped in the patient experience. 
  • Meet Regularly.  By definition, councils differ from ad boards as an enduring body that agrees to meet on an ongoing basis.  It’s up to the host company to commit to regular meetings, make them a priority, and be sure they’re scheduled at consistent intervals.  Contracts will typically specify a set number of meetings to be held over a specific time.  Be sure to honor that agreement and establish a logical pace between meetings.
  • Prepare – and Be Prepared.  Council members view their participation as an opportunity to speak for and support their communities.  They not only commit to attend meetings, but to prepare for them.  Depending on the meeting topic, develop pre-read materials for their review.   For example, sharing a brief overview of how a clinical trial works, or a sample informed consent form, can set up a more meaningful discussion around these topics when the council meets.  Similarly, if a company is seeking input on a patient education piece, send it in advance, with simple, clear instructions on how they should evaluate it before the group meets.

Internal preparation is equally important.  If a meeting is to involve internal stakeholders who rarely interact with patients, developing a “Rules of Patient Engagement” backgrounder can be helpful tool for them.  Also be sure to schedule an internal pre-council meeting, as needed, to run through the agenda, review technology and platforms, roles and responsibilities and any questions participants may have, to ensure all runs smoothly when the council convenes.

Measuring Success & Sharing Outcomes

  • Evaluate the Event.  Often during a meeting, there will be lots of nodding heads, robust participation and a sense that all went well.  These are indeed worthwhile indicators, but won’t tell the whole story.  Be sure to build in a quick evaluation process that will ask participants how they felt the meeting went.  Did they feel heard?  Were they adequately prepared? Did the moderator perform well?  Were the discussion topics on point?  Were questions answered?  Soliciting this feedback will not only inform future meeting planning, but send the message to members that you’re committed to listening and improving along the way.
  • Share a Summary. Be sure to commit to sharing a summary of the meeting with all participants in a timely manner.  Create a standard template that includes participant names, meeting agenda, key discussion highlights, select quotes that reflect the general conversation, action items and next steps.  The report should be a fair and accurate representation of the meeting, including constructive commentary or advice from members, while reflecting a company’s commitment to act on advice to the fullest degree possible.
  • Report Back.  Nothing says commitment like action.  Companies can show they value – and act on – input from the council by providing periodic updates on steps taken based on their counsel.  For example, share a final version of a patient education piece, noting how the council influenced content or tone.  Or the execution of a company webpage on clinical trials, that similarly benefited from council guidance.   Providing these proof points sends the powerful message that the council plays a critical role in informing patient-directed efforts and helps to validate their decision to participate as members. 

In Part II:  We’ll explore ways to innovate Patient Councils to create even greater value for all participants.