Amplifying the Patient Voice: Define the scope of the Patient Council

There is value to incorporating the insight and experience of patient experts throughout the patient journey.  In Part 1 of this article, I focused on the key steps of establishing a patient council – start-up administration, scope definition and membership.  It is important to build a solid foundation, but value can only be realized through effective execution, which I will address below.

Invest in establishing team cohesion

New team startups can be challenging under any circumstances.  Establishing a patient council is difficult.  These patients do not work for the same company.  Their motivation for participation may be different.  Their expectations might be varied.  Initially, the common thread is that each of these patients and caregivers has experience of the patient journey – the trials and tribulations, the successes and setbacks, the challenges and frustrations – and we have a desire to pay-it-forward to allow future patients to stand on our shoulders as we do of those before us.  Patients are motivated, but how can this energy effectively be harnessed?

It is important to invest in team building for the patient council.  Ideally, this should occur early in its inception, and if possible, conducted in a physical face-to-face session.  There are limits on what can be achieved regarding team building via Zoom.  It’s analogous to the relationship between a doctor and a patient, particularly with a chronic disease.  Much can be accomplished via telehealth, but it is important to establish trust and rapport between doctor and patient, and this is best established via direct physical interaction.

Unfortunately for our council, the pandemic interrupted our evolution as a cohesive unit.  As a group, we decided to continue our growth.  The council invested its time.  Each patient council member was given 30 minutes over the course of a few months to tell her/his story – not just their patient journey, but their story – who they are, what motivates them, about their families.  By the end of this exercise, we were bonded brothers and sisters.  We understood the opportunity before us - both the privilege and responsibility of representing patients everywhere.

Establish Standard Ways of Working

In order to achieve council alignment, avoid frustration, and gain operational efficiency, standard ways of working should be defined, agreed, and implemented.    Areas of consideration include:

Schedule meetings – Meetings should be scheduled at a consistent time (e.g. – every second Wednesday of the month at 11 AM).  Meeting frequency should be dictated by the amount of activity.  Initially, both my councils planned to hold quarterly meetings, but I believe that is too infrequent and precludes the council from building a working cadence.  The council now meets monthly for three hours.  Meetings may be shortened if there are not enough topics, but they are never lengthened (a separate meeting would be arranged if required);

Meeting Venue – Meetings are conducted via Zoom.  In the past, there was hesitancy in conducting video teleconferences as delivery platforms were unreliable or unfamiliar for many users, and teleconferencing, with many participants, could be uneven.  Today, perhaps as one of the few benefits of the pandemic, video conferencing tools are very reliable and easy to use as our primary meeting platform.  Our target is to have one face-to-face meeting every year (in non-pandemic times).  These face-to-face meetings are held at a company location.  It also provides a great opportunity to further educate the council members on the company – e.g. – touring the laboratories, visiting a pilot plant/manufacturing suite and of course, visiting with employees while on-site;

Pre-read material – I highly recommend providing materials for review pre-meeting.  This is important for several reasons.  It provides council members with the opportunity to familiarize themselves with the project and the specific challenges for discussion.  This leads to a more robust, insightful conversation as less time is required to ‘get up to speed’ and more time is spent discussing tradeoffs and other considerations.  It is also very helpful for the project teams to include specific questions they want to address in the pre-read materials.  This helps council members focus on these areas of concern.  In addition, council members often provide written feedback to these specific questions in advance of the meeting, allowing the meeting dialogue to build from those responses.  A key element is for these materials to be available to council members for review several days prior to the meeting.  We target a week in advance if possible.

Consistent presentation of information – It is helpful to provide project teams with a template of what to present to the patient council.  This should serve as only a guideline, but it provides a level of consistency that is helpful for council members when reviewing materials from many project teams.

Allow Sufficient Time – Be sure to allow sufficient time for each agenda item.  There is a tendency to pack an agenda, particularly if the council meets infrequently.  Proceed with caution as discussions can be quite robust.  It is good practice to build buffer time into the agenda to accommodate lengthy discussions.  Additionally, remember that council members were patients, and many of them are still patients.  Sitting for long periods of time can be difficult for some, so be flexible in accommodating these needs.

Establish a safe, supportive environment – Conversations can be raw for some council members, touching on subjects that are very personal and emotional.  Encourage openness and honesty.  Council meetings must be a safe and supportive environment for all participants.  Patients and caregivers typically are very aware when someone is struggling.  Allow these vulnerabilities but support them.  Allow anyone to call a ‘timeout’ to regroup and regather. It can be very difficult when reviewing an oncology asset in a disease with bleak outcomes or very challenging requirements – a rush of memories can overwhelm at times.  Just be aware and prepared for this inevitability. 

Communications with the council - Given that much of the material is sensitive, a standard approach should be established.  As mentioned previously, consider providing council members with corporate email accounts so sensitive communications occur with the firewall.  External emails are only used for generic conversations – e.g. – checking on availability.  The company should be prepared to support council members with any technical support/troubleshooting that may be required.  This must be painless for council members.

Feedback – It is important to capture feedback, but our approach needs to be consistent.  If the council is individually reviewing an Informed Consent Form, should members track changes in the word document or just post any questions or considerations in a comment?  When commenting on a pre-read presentation deck, should the council make comments on the actual slide or post a set of comments in the back?  This may seem trivial but can have an impact.  Is it helpful when an individual is reviewing materials to see what another council member has said or is it ‘better’ to review the materials without being influenced by others – at least not influenced immediately by others?  We just need to be clear on how we want to operate. 

Define Roles – Roles should be clearly defined.  Who is facilitating the conversation – one of the internal council members or the presenting project team?  There should be a timekeeper to keep to schedule, particularly if multiple groups are scheduled.  Finally, I would encourage having a dedicated scribe.  Discussions are often free flowing, and it is important to capture the agreements and actions, but also the nuances of the conversation.

After Action Review – Be sure to build a little bit of time at the end of the agenda to conduct a quick review of the meeting – what worked well, opportunities for improvement – and incorporate these learnings into future sessions.

Constantly Explore New Boundaries

While it is important to define the scope of the patient council at the outset, it is also important to be flexible and prepared to adapt as opportunities arise.  How can an organization leverage this asset?  Council members should be considered as ‘patient ambassadors’ and proactively engage the broader organization.  At one of my clients, the patient council is sponsored within the R&D organization.  While project teams come to council meetings, there are broader engagement opportunities.  Council members go out to speak across the organization, to establish a direct connection between researchers and patients.  

Project teams bring topics and materials to the council for review and input, but we soon learned that better engagement was more iterative, where project teams seek input from the council, incorporate the feedback and then return to the council.  This ongoing dialogue nurtured more thorough and insightful conversations as there was more familiarity with the project and its issues.  We started to review materials off-line to provide even more timely feedback, but more was needed.

We created a ‘patient peer system’ where a council member serves as a direct partner to a specific team.  Basically, a patient is available whenever a team needs a patient perspective or has a question.  The patient peers are more familiar with ‘their’ project and upcoming challenges; the peer can quickly direct the team to a more appropriate patient as appropriate. 

The peer system can press boundaries even further – early review of protocols, patient participation at clinical site training sessions, driving the strategy and design for greater patient diversity and inclusion in clinical trials, early review of patient facing materials, testing new digital technologies, co-develop new apps to capture patient reporting, new patient outreach programs, patient/caregiver input on marketing materials and actively focus on improving affordable access to new treatment therapies in underserved communities

Healthcare companies want to work together with patients. Yet often struggle to collaborate efficiently with them and miss the opportunity to integrate their voices where it matters most: creating meaningful healthcare solutions for patients. 

Patient councils provide an excellent platform.  At its most basic level, it allows for direct patient engagement, for companies to proactively solicit the voice of the patient throughout steps of the patient journey.  Yes, there is value to be realized, but I believe this is a missed opportunity because patient councils can serve as a springboard to deliver so much more – true collaboration with patient experts as partners. 

Patients with Personal History of Disease bring that unique ‘walk in my shoes’ insight that others do not have.  I am constantly reminded as I meet with healthcare executives or medical professionals who thank me for letting them see through my patient lens!  We should expect nothing less than working as partners!