Patient Advocacy in Boston: Best Practices and Lessons Learned

Key takeaways from a conversation with some of Boston’s leading experts in patient advocacy.

On June 2nd, in collaboration with Inspire, Swissnex in Boston hosted a workshop on the topic of patient advocacy, with a keynote by MassBio President and CEO Robert Coughlin, as well as closing remarks by Andrew Frates, a patient advocate and driving force behind the ALS Ice Bucket Challenge. Participants also had a chance to move to breakout sessions with experts on various topics within the field of patient advocacy. Below are some of the big takeaways from the day:

Patient advocacy is an act of passion. Many people within patient advocacy groups have a real, personal connection to the patients and are looking to help however they can.

Regular listening and bold actions are key. As breakout session leader Mike Walsh pointed out, “The life sciences companies held in the highest regard are those that make a practice of regularly listening to understand the needs of patients and take bold actions to deliver value in response.”

To raise money, you must first bring awareness. We learned from Andrew Frates that the ALS Ice Bucket Challenge dramatically increased the number of internet searches looking to find information about ALS, and this also corresponded to raising more than $200 million for research and support.

Many diseases addressed by patient advocacy groups suffer from being small addressable markets, but if we think about them as test cases for precision medicine, then they are interesting for developing products.

Companies that build their missions around data are good partners for PA groups because these companies can be disease-agnostic, looking for an indication to put their technology to work.

Patient advocacy is evolving beyond the traditional role of simple patient education — advocates want to be contacted for more than just access to patients. The new model of patient advocacy is to bring organizations together to accelerate research, share results, and promote patient-led trials.

Outreach to patients needs to be more than an email blast. It needs to include the patient in the journey, making them feel like more than just a data donator.

Patient advocacy groups often know a lot about why other trials failed. They have the knowledge to help avoid pitfalls.

Data privacy is a huge concern to patient advocacy groups as they try to create communities of trust and online resources. Tackling data privacy effectively is a significant hurdle to all stakeholders.

Perhaps most importantly, this event goes to show how many people and organizations exist in the Boston area who support growing and improving the field of patient advocacy. As Bob Coughlin put it in his moving keynote:

Everything that all of you do as patient advocates and people that work in the life sciences industry, there isn’t anything more important. This is personal.

For more information about the event, please visit Inspire’s blog post, which includes more quotes from and information about the speakers.