This Symposium Was Truly Rare

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Sometimes you get the chance to experience something that resets your expectations.

Global Genes and UPenn Orphan Disease Center sponsored this event. No affiliation with Salem Oaks.

The Salem Oaks team had the opportunity to attend the Rare Patient Advocacy Symposium in Philadelphia on May 19, 2018.  The event was organized in partnership between Global Genes and the Orphan Disease Center at UPenn.  Although I may have only recently jumped into the world of patient advocacy and patient-centricity, I am a seasoned Pharma R&D guy and I have been to countless conferences.  So, I thought I knew what to expect when I suggested that we attend as a company.

I was wrong.

Kudos to the design team for excellent use of a Saturday.  The Rare Patient Advocacy Symposium was much more real, gritty, and pertinent than I have seen elsewhere.  I thought I would take a few minutes to explain my conclusion and issue a call to action for more of this type of offering.

Right People

The first distinguishing factor was the people involved.

  • The intended audience included mostly people interested in becoming Patient Advocates that are just getting started along the path. For whatever their reason, they want to do more and have a real impact.  They had very basic and practical questions.  They were excited to see what is possible.  And they weren’t there to sell themselves.  I was probably doing more ‘purposeful networking’ than any of them.
  • The line-up of presenters spoke to the hearts and minds of these people. They spoke to the hearts with their own stories, struggles, and successes.  They spoke to the minds by providing concrete information about the drug development process.    Many of these presenters would probably have been in the audience 4 or 5 years ago.  For the most part, they were able to meet the audience where they were.

Right Topics

Secondly, the Symposium covered the whole biopharmaceutical R&D process and how these people could get involved, really involved.  This was a refreshing change from the refrain of methods for increasing recruitment or changing the clinical trial experience, matchmaking, and more commercial aspects of the business.   People with rare diagnoses face different challenges than those with widely prevalent diseases.

The rare patients may have a disease that almost nobody knows anything about.  For them, it’s about getting the right research done to close these knowledge gaps.  It’s about doing the work to fill those knowledge gaps themselves.  It’s about making real contributions that advance the search for treatments and cures. These people want more than a voice, they want to get their hands dirty.

Right Levels

Global Genes and ODC created an innovative dual-track event that covered a list of topics offered at beginner and advanced levels.   This allowed my team members, who have their own strengths and experience but little knowledge of biopharma, to start with the basics.  It allowed me and others who knew the field to engage in some more nuanced and open-ended discussions.  This also provided for great conversation as we shared our learnings with each other afterward. While I have seen conferences offer separate topical tracks before, this is the first time that I saw this parallel track approach.

We who work in this field often forget that this is all new to most people.  They have no reason to have heard medicines development language before.  The acronyms are meaningless to them.  They struggle to discern the scientific, medical, regulatory and process elements.  The drug developer’s word salad makes no sense to them.  We need to provide the foundations first and then help them learn more.

This takes time.

It takes patience.

And most of all it takes skill in understanding what people already know, anticipating what they need to learn next and then helping them learn it.  The old format of presenting as much information as possible doesn’t really help people grow and therefore doesn’t help shift the balance of power between technical expert and expert patient.

Please sir, may I have some more…

My experience at the Rare Patient Advocacy Symposium got me to thinking about what we really need to get patients, parents, and care partners onto this fast-moving highway of medicines development.  We need to build on-ramps that give them the basic skills and knowledge that will allow them to operate at a higher level.  Once they get up to speed, we need to provide the practice and opportunities for them to drive the bus.  We also need to provide them the tools to navigate this complex system and rules of the road so that they can get to the destination they are seeking.  Finally, once they know the road, we need to build their confidence to go off-road and explore new paths that no one else has dared.

In short, we need educational venues, courses, and programs that build on what Global Genes and the ODC  have created.  More conferences that are affordable, accessible, and designed to meet people where they are on the learning curve would help greatly.

However, conferences are limited in time and space.

We also need to create online courses, virtual classrooms, and even in-person classes that patients and care partners can learn at their own pace.  We need ways to extend the learning into application, correction, and reflection.  Such vehicles also allow patients and caregivers to meet others like them.  They encourage communities to form and grow strong.

Communities of patients can learn very quickly. Therefore, it is very important that they have credible, reliable, and easily digested sources of basic process and regulatory information.  Once equipped with these resources, even the smallest community or advocate group will be able to bring their personal expertise to bear.  They too will be able to reach the hearts and minds of others.

Salem Oaks Want to Help

Salem Oaks is committed to empowering patients to shape the future of medicine.  We seek to work with patients, and particularly disease groups, to build and provide these educational tools.  While we work with patients with all types of diseases, we will design custom solutions to meet your patients’ specific needs.

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Photo by Ishan @seefromthesky on Unsplash

Posted by Kevin Freiert


Posted in

Kevin Freiert

Kevin is the CEO of Salem Oaks Enterprises, LLC. Committed to working with patients, their advocates, biopharmaceutical companies, regulators and other stakeholders to develop educational tools that help patients bridge the gap between themselves and Biopharma R&D.

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