Amplifying the Patient Voice: Establishing a Patient Council

“Voice of the Customer.”  The customer has been a focus of business for over fifty years and a key component of Total Quality Management systems.  The ‘Voice of the Customer’ captures the customer’s expectations, preferences and overall perception regarding a product or service.  It is important to ‘Deliver Value in the eyes of the customer’ – because if the customer does not value the service or good being provided, then he/she ultimately will not pay for this service. Historically, industry has struggled to identify who its primary customer is – doctors who prescribe medicines or payers who pay for the service or regulators who approve products or the patient, who is the ultimate user of the product.

The focus on capturing the voice of the patient in healthcare is relatively recent.  There is an ever-growing shift toward value-based healthcare focused on delivering patient outcomes versus paying for healthcare services delivered.  Regulators are specifically seeking feedback on patient preferences as part of their review process.  Patients and caregivers actively seek out social media for likeminded individuals suffering from a disease and share experiences with one another.  How can we harness these patient experts, their experience and insight while providing them a seat at the table?

Many companies have established patient councils to engage patient experts.  I have the privilege to serve on patient councils at several pharmaceutical companies as well as a patient and family advisory council with a large healthcare system.  I opted not to serve on other councils as I believed they were not being structured to succeed. 

From this unique perspective, I will describe the key aspects of establishing and operationalizing a successful patient council.

Address start-up administration

It is important to address the administrative aspects of the council early.  From the company perspective, how will the council be funded?  Who from the company will be actively involved on the patient council?  Start-up considerations include:

  • Single point of accountability -   There should be an internal employee responsible for the performance and coordination of the council.  The amount of effort required to run a council should not be underestimated.  Some companies engage third party patient engagement consultants to help with the logistics of operating the council, but accountability must be owned by the pharmaceutical company.
  • Establish contracts with external experts – These contracts should include the scope and expectations, billing rate, an estimate of the number of hours expected over a year, payment terms and logistics on how to submit bills.  Patient experts have PhDs – Personal History of Disease – and this unique experience and insight should receive fair market-based compensation as consultants.   Additionally, this process should be straightforward and non-bureaucratic.  One of my clients decided to override their normal terms with contractors and pay council members within thirty days of receiving a bill (vs their normal 60-day term) realizing that the bills are not large, and that quick payment is greatly appreciated by these small-scale consultants;
  • Technical support - It is important to address the working environment upfront.  Most patient council members are individual patients or caregivers, who do not have technical support readily available.  If the council plans to use on-line video meetings with Zoom or Webex or Teamplay, the company should be prepared to provide technical help as needed.  If a team site or work environment is established on a company platform, the council members should be able to function seamlessly.  
  • Privacy and Security - The council should establish a work environment that meets the security and privacy requirements of the company but also is easy for the patient council.  One of my clients determined that exchanging project related information via external email was not secure and established company email accounts for council members so all communication occurs within the company’s firewall.  
  • Make it Easy - Companies must make the administrative matters easy for their council members.  An onboarding guide can be quite helpful in bringing new council members up to speed quickly.

Define the scope of the Council

A patient council charter/scoping document should be created that clearly defines the remit of the council.  It is important to engage council members in establishing the scope, creating a greater sense of ownership and buy-in.  This may take time, but in the end, all council members should be able to clearly articulate their responsibilities as a group.  Personally, I have found it is often important to specifically state items that are within scope and also those items that are beyond the remit of the council for absolute clarity.  

One consideration regarding scope is what part of the lifecycle should be included.  Is the focus of the council on commercialization – those products that are approaching launch or have been approved and are on the market?  Or does the focus include aspects of product development and clinical trials that often reside within the Research and Development organization?  Or is it everything that might relate to a patient journey – from early engagement in R&D through product launch and commercialization?  The answer to these questions likely will influence where the council might reside organizationally, how it is budgeted,  and who sponsors the council.

Another scope consideration is the level of therapeutic spread.  There is a difference between The Breast Cancer Patient Council versus a Pan-Oncology Patient Council versus The Company-wide Patient Council, and it is important to consider which path to pursue.  Obviously, the scope of the council will influence who should be invited to join the council, but this should be a considered decision.  How does a company decide?

Based on my experience, there is no perfect answer.  Several factors should influence the proper scope.  The company should consider the size of its portfolio in a particular therapeutic focus. If there are enough projects, products or overall activity to support a focused council on breast cancer, then a company should establish a council focused on this space.  And while each patient’s and caregiver’s experiences are different, the shared experience of breast cancer will provide extraordinary depth and perspective on the breast cancer journey. 

On the other end of the spectrum the patient council that supports an entire company can present a bit of a challenge as the patient journey for a chronic disease is quite different from an acute disease.  The threads of similarity across the council could be very different, and while there may be benefit to a very diverse perspective, it also might prove a bit too dilutive to gain that needed insight.I believe a Pan-Oncology Patient Council is appropriate – neither too narrow nor too broad, but just right.  Cancer is quite broad.  The recovery prognosis for some cancers is excellent while for others it may be challenging.  Treatment plans can vary from very short to never-ending.  With the rapid pace of technological revolution, the treatment paradigms can be so different – from personalized CAR- (chimeric antigen receptor) T Cells to precision medicine to standard radiation to taking a ’watch and wait’ approach.  However, there are still enough threads in common to pull forward key learnings. 

The patient council can learn from one another, where our output is much greater than the sum of our individual parts.  Perhaps my experience with side-effects as a pancreatic cancer patient are very different from those of a lung cancer patient, but there are threads of consistency – e.g. – the challenges of managing pain, maintaining good nutrition, dealing with neuropathy from chemotherapy or radiation treatments, trying to maintain a degree of normalcy in one’s life, how to deal with the psycho-social factors associated with my cancer – and, of course, all of the additional challenges living in underserved populations. 

We each look at situations through our unique patient and/or caregiver lens.      

Select Council Membership

Within the Scope of the Council discussed above, it is important to assemble a council of diverse background and experiences. 

Do you plan to run a virtual council via on-line video meetings?  Or if you prefer to have face-to-face council meetings, are you willing to pay for council members to travel to a common location?  These factors could influence your selection process.  Given familiarity with on-line video tools as a result of the pandemic, I would not restrict council membership to a limited physical location.  Additionally, you should consider time zones of the council members and how that will impact the logistics of setting up meetings.  One of my councils has membership across many time zones, which can present some scheduling challenges.  The benefit to a global pharmaceutical company, however, of patient experience with a wide variety of health systems, can be invaluable.

I believe the ideal size for a council is 6-10 patients and caregivers.  Diversity must have a voice – disease diversity, geographic diversity, economic diversity, underserved populations, caregivers – they all need a voice.  A council with 6-10 patients is small enough to enable active participation across diverse experiences and perspectives, but it is large enough to provide coverage for meetings in case all council members are not available.  Additionally, council members always have the opportunity to provide written feedback if unable to attend the meetings.

There should also be internal company staff as council members.  Each of these internal staff should have a passionate patient focus – some might be survivors themselves; some have watched family go through the challenges of cancer, but they are all highly motivated to partner with patients and actively promote the patient voice as part of the development process.  

It is important, however, to focus on the mix of internal resources relative to the external participants.  Internal resources should not exceed one-third of the total membership of the council (3-5 internal members if there are 6-10 external patient experts).  The focus must be on external perspective and experience and the internal voice should never ‘overwhelm’ the conversation.

 As an example, my pan-oncology council is quite diverse medically – 

  • different cancers (some with multiple cancers) 
  • different stages of diagnosis, 
  • different clinical trial experiences – from zero to many
  • different ongoing medical challenges and associated side effects - pain, nutrition, neuropathy…
  • different psycho-social challenge including emotional, financial, and work
  • different caregiver and family support

but we are all driven to maximize our ‘new normal’ life as a cancer survivor and to help future patients benefit from our patient experience.  Unfortunately, I cannot provide a boilerplate solution on which patients make good council members, but key characteristics I would focus on include: 

  • Empathy 
  • Humility 
  • Good listener 
  • Speak candidly
  • Willingness to ask questions and learn from others

But the most important characteristic is curiosity.

Now that the council is established, how do companies realize the potential value?  What steps are needed to effectively operationalize the council?  And while that is critical, I would encourage companies to think creatively beyond the typical boundaries of a council, striving for a council where patients are engaged as true co-collaborators/partners throughout all phases of the patient journey.  Do not settle when establishing a patient council!  These patients with Personal History of Disease should be viewed (and used) as a corporate asset.  The goal must be a council that is a truly high performance team, a group of highly skilled people working in cross-functional areas and are focused on achieving a common business goal.

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