How to Create an Effective Patient Advisory Board (PAB)

I recently put together a guide to creating PABs for a startup biotech company. I have written up and expanded that guide here below in the hopes that some other entity out there might also find this useful. Just to get my bona fides out of the way, I have helped set up 5 different PABs to date, 2 for large pharmaceutical companies, 2 for biotech startups, and 1 for one of the largest movement disorder clinics in North America. While I cannot say that all of them were successful, I have learned quite a bit about how to set them up to succeed.

Some of the recommendations written below are amenable to change, however there is one thing that is universal – to be effective a PAB must have buy-in from, and regular contact with, those in leadership positions from the organization they wish to advise. Ideally from the very top. Without that they seem to either slowly crumble or worse, become just a rubber stamp.

Now the first question I often get about PABs is why? Why are they needed at pharma/biotech companies? I’m always a little stunned to even get this question as to me they seem self-evident. But for anyone that might need convincing, here is the analogy I most often use: imagine you manufacture clothing but are staffed only by men, one day you get tasked with having to make clothing for women, what do you think would be the first thing you would do?

Now, the most successful PAB among those that I have had a hand in creating has been the one at Rune Labs. One of the key reasons why it has been so successful is that from the beginning we had the support of the CEO, Brian Pepin, who deserves a lot of credit for taking us seriously and setting us up to succeed. At the outset we established a shared vision and set of values that help guide our respective decision making processes. And while the mission I set out to accomplish with the leadership at Rune Labs is not complete, we have succeeded in some of the goals we set for ourselves at our first PAB meeting:

Structure 

The following is a rough guide to the nuts and bolts of meeting cadence and structure within a PAB. More important than any one item is clear communication about how each will help the larger organization more effectively reach its goals.

Intake meeting – Begin by gathering opinions/ideas from the organization on what their goals are and what the key milestones are that they hope to reach. Then prepare a detailed proposal tying their needs/goals to a PAB. 

Bi-Weekly – PAB chair meets with the CEO or another designated person on the leadership team for 30 min to an hour and updates them on any meetings/outreach done or may be intending to do. PAB chair keeps a running list of every such interaction for internal leadership personnel. In turn, at these meetings the CEO often asks for feedback on product updates they might be launching soon or introductions from their contact list. 

Monthly – PAB chair ensures other members of the PAB regularly keep in touch with their pre-designated counterpart at the company, in effect a “buddy system”. Each PAB member is typically assigned one buddy who will be their main contact point at the organization.

Quarterly – PAB chair organizes and directs PAB wide meetings where individuals from different departments present a project they are working on, usually it is something they would like critical input on from the PAB, and we then discuss and give feedback as a group. Different members of the PAB also typically present ideas to help improve the product to the organization at these meetings.

PAB members may also, at the organization’s discretion, represent them at conferences or in meetings with potential partners. The nature of the relationship between the chair, the PAB and the organization can be either public or private, though tend to work best when open. 

Remuneration

Another crucial, though too often overlooked part of this equation is that each member of the PAB should be paid by the organization they intend to advise. This is not charity or volunteer work and PAB members should never be made to feel privileged just to be included. If the organization is sincere in its goals and wants the PAB to accomplish the tasks assigned then they should be treated like any other consultant or key opinion leader and paid accordingly.

In practice, that means that each member of the PAB is an independent contractor with a minimum monthly rate that depends on their level of experience and involvement, generally that range is $150-300/hour (USD) for between 5 to 40 hours of work a month.

Personnel

First rule when interacting with patients of any kind is do not patronize them. We aren’t heroes and we do not exist to be a source of inspiration for you. We did not choose to have whatever disease we have. We are just people trying to do our best despite the cards we have been dealt, it is crucial that we are treated as such. PAB members are professionals that in addition to having disease specific expertise tend to also have at least 10 years of experience working as Lawyers, Engineers, Software Developers, Product Designers, Social Workers, Scientists etc. etc.

That said, each PAB member not only lives with the condition or has experience as a caregiver for an individual living with that condition, but they are also outspoken and opinionated. These qualities, annoying as they can be at times, are critical to the success of any PAB and the organization it wishes to advise. A point that needs to be reiterated, the absolute worst thing that can happen to a PAB is that it gets turned into a rubber stamp of approval. They are there to give critical feedback that is sometimes difficult to hear but necessary to avoid pitfalls such as these…

Case Study

Below is a partial list of milestones Rune Labs has hit in the two years since we began the PAB. While I cannot claim the PAB to be responsible for any one of the milestones hit, I do believe we have influenced a variety of decisions the company has made that has led to each of the milestones listed below being met.

• Began by helping Rune Labs host and run their first Ideathon with Parkython to brainstorm solutions for people living with Parkinson’s Disease. We were able to bring together over 40 individuals from all over the world to talk about creative ways we can improve an individual’s quality of life.
• Launched StriveStudy: Rune Labs’ New Clinical Trial Platform to Accelerate the Development of Precision Neurology Therapies
• Signed deals with leading stem cell transplant companies BlueRock and Aspen. 
• Over 8000 people now use StrivePD to help manage and track their symptoms of Parkinson’s disease.
• Members of Rune Labs and the PAB have also written articles together, recorded podcasts, launched product updates, attended a variety of conferences and joined each other in a number of exercise classes for people with Parkinson’s, and much much more.

Summary

Here is a quick recap of the four basic qualities I believe every effective PAB must have to succeed in its goals:

1. Leadership in the larger organization must believe in the need for a PAB and agree on a shared set of values.
2. The PAB must be organized and structured in their dealings with the organization.
3. Recruit dynamic and outspoken individuals.
4. Treat them like what they are, skilled consultants and pay them as such.

If you want help building a PAB for your organization you can email me: benjaminstecher (at) gmail (dot) com

All images above were created using meta.ai

One last little nugget to share is this rather apt comic I saw on Charlie Lambropoulos Linkedin. When a PAB is working effectively they should be able to shrink the steps taken from 1 to 12. Enjoy…