Elevating the patient voice: the 2017 BIO Patient Advocacy Pavilion

Aug 15, 2017

The growing interest in patient advocacy from the biotechnology industry was reflected at this year’s Biotechnology Innovation Organization (BIO) International Convention, where over 16,000 biotechnology companies, academic institutions and patient advocacy and related organizations from across the US, and over 30 other nations, convene annually.

Through hosting educational workshops, training courses, keynote talks and panel sessions, the event aims to accelerate the growth of the biotechnology industry and to drive the development of innovative medicines for patients.

One of the Convention’s most significant features was the Patient Advocacy Pavilion – a forum situated in the center of the San Diego Convention Center and designed to encourage discussion around incorporating the patient perspective in medicine. The area was designed to facilitate potential partnerships between attendees from both the biopharmaceutical industry and the patient advocacy community through providing an accessible and relaxed meeting space.

Defining and understanding ‘value’

According to Cara Toman, Director of Alliance Development at BIO, this year’s event proved its most successful yet, hosting 60 patient advocacy groups and more than 450 meetings, compared to last year’s 50 and 341, respectively.

“The success of this year’s Pavilion is a testament to the growing importance of the patient voice in drug development,” said Toman. “As healthcare becomes increasingly patient-centric, the biopharmaceutical industry is partnering with patient advocacy organizations to get new, effective medicines to patients.”

This new wave of ‘patient-centric medicine’ is making the healthcare industry re-evaluate what makes a new medicine truly valuable to patients – a hot topic at discussions in this year’s Pavilion.

“Truly understanding the value of a product is one of the biggest challenges for modern-day healthcare and it was clear from this year’s event that patient advocacy groups are going to be central to finding a solution,” Toman went on.

An environment for engagement

The Pavilion’s increased popularity from last year wasn’t only because of the increasing trend towards patient-centric care, however. According to Toman, a lot of its appeal came from its casual environment.

“Although the organizations have a small kiosk to exhibit their materials, they aren’t obliged to man them at all times,” explains Toman. This structure allows exhibiting patient advocacy groups time to interact with each other and attendees and potentially strike groundbreaking partnerships.

“We have always wanted to create a platform to encourage interaction, but one that is more about creating conversation rather than exhibiting content,” Toman explained.

If they wish, groups with an kiosk at the Pavilion also have the opportunity to deliver talks or presentations to the attendees, letting them talk directly about what their group offers.

The Pavilion in full flow

Including the patient

One of the most popular speaking sessions was one offered during an informal session referred to as a ‘Fireside Chat’ in which three patients led the discussion.

Entitled “Understanding the Patient Voice: Three Unique Perspectives on Healthcare”, the session convened Liz Kennerley, rare disease patient and advocate; Emily Kramer-Golinkoff, cystic fibrosis patient and founder of Emily’s Entourage; and T J Sharpe, stage IV melanoma patient and blogger, each of whom spoke about living with their respective diseases.

According to Toman, the session was extremely well received by attendees, who were delighted that patients had been invited to host a discussion at an international convention.

“Patient advocacy is about acting as a voice for what patients really want from their healthcare – and the only way to improve that is by hearing from the patients themselves,” explained Toman. “Hosting a session that provided insights directly from the patients really rang true with a lot of our attendees.”

A shared goal

Perhaps the greatest success resulting from this year’s Pavilion experience, though, was the sense that the patient voice was becoming a shared priority for both biopharma and patient advocacy groups, Toman believed.

“The biopharmaceutical industry and patient advocacy groups have always operated alongside each other but with the same goal: improving healthcare.”

Watch our interview with Cara from this year’s Pavilion above.

Elevating the patient voice: the 2017 BIO Patient Advocacy Pavilion

Author

Cara Toman is BIO’s Director of Alliance Development, serving as the primary liaison between the trade association and third party stakeholders, including patient advocacy organizations.  In this capacity, she continually works to build alliances to advance the objectives of BIO and the biopharmaceutical industry by identifying areas of shared interest with patient advocacy organizations and other healthcare stakeholders.