DIA 2018 Global Annual Meeting

Highlighting True Patient Engagement at the DIA 2018 Global Annual Meeting

Deborah Collyar
Founder and President,
Patient Advocates In Research (PAIR)

Steve Roberds
Chief Scientific Officer,
Tuberous Sclerosis Alliance

Ronnie Todaro
Senior Vice President and Chief Operating Officer,
Parkinson’s Foundation


ach year, DIA is assisted by hundreds of volunteers to plan and organize the DIA Global Annual Meeting, including members of the Annual Meeting Planning Committee (AMPC). The AMPC considers and helps develop topics for each track featured in the Meeting.

As some of the newly appointed Patient Engagement (PE) Track members, we are sharing our thoughts about what DIA and its members can learn about Patient Engagement at the 2018 DIA Annual Meeting.

DIA Process for the Annual Meeting

The process DIA uses to offer relevant and useful sessions at each Annual Meeting involves many steps and people. Most sessions are procured from a Call-for-Abstracts. Preparation for DIA sessions spans five months, and includes work with AMPC members to determine priority topics, to review and select abstracts, to help schedule sessions, collect content, and help shepherd speakers.

Building on the success of its first “Patients Included” accredited conference in 2017, DIA continues to offer “Patients Included” meetings in 2018, starting with the DIA 2018 Global Annual Meeting. This means DIA is committed to incorporating patients as experts and active contributors while ensuring they are neither excluded nor exploited. In addition to patient speakers, DIA is also offering full and partial patient partner scholarships this year.

Goals for Patient Engagement at DIA 2018

Patient engagement is critical to produce quality products that truly address unmet needs for each patient population. Some communities face unique challenges, especially those with rare diseases. While in the past, the DIA Global Annual Meeting had a rare disease track, in the 2018 Meeting rare disease topics cross all tracks. The Patient Engagement (PE) Track was the focal point for these sessions, and two of our members focused primarily on this aspect.

With this in mind, we set the following goals for the PE Track at this year’s Global Annual Meeting:

  • Help shape DIA’s role in bringing stakeholders together to raise the commitment of its members to include patients as partners in research decision-making. To do this, we sought to involve patients, caregivers, and patient leaders across tracks and sessions.
  • Rather than simply surveying or talking “to” patients, showcase what works and what doesn’t work so that attendees learn how to truly integrate patient voices into development plans, preclinical and clinical research, and into the post-commercialization process.
  • Ensure that each attendee leaves with information and inspiration to take active next steps to partner with patient communities.

Expectations and challenges for the PE Track

Since this was our first year, we expected to learn from other experienced AMPC members, but did not anticipate the extremely steep learning curve and condensed timeline that unfolded. The complexity of matching hundreds of submitted abstracts to the key priorities espoused by the AMPC was also surprising. So many good ideas and topics were submitted that we had to combine and prioritize as many as possible, knowing that some would not be included. We chose the ones that best reflected our goals to provide an enriching experience for attendees.

The Patient Engagement concept is clearly gaining ground, but we only received half as many abstracts compared to the Clinical Observation Track. While it is rewarding to see that some DIA members recognize the necessity and value of creating and maintaining true partnerships with the patient community, 75% of abstract submissions centered on patient observation rather than true patient engagement or involvement.

For example, instead of including an actual patient and/or patient organization in a proposed session, submitters relied on industry or vendor members to describe their observations. Since the PE Track is committed to ensuring as much coverage as possible of real patient voices and to providing a broader spectrum of voices from across different patient communities, we altered these sessions to emphasize ways to engage and involve patient representatives throughout the product life cycle.

While national policy-driven groups are still included, we have also chosen speakers who partner directly with researchers on topics such as planning, project management and operations, preclinical and clinical research, and ways to deliver clinical results.

A large number of proposed sessions also appeared to promote vendor capabilities, rather than showcasing the patient voice and its involvement in various projects. We ensured that these sessions highlight actual patient engagement, with discussions that can foster active, consistent, and ongoing involvement.

By allowing active discussions during these sessions, we hope to build a strong, long-term interest in patient engagement among an informed, educated, and active workforce. We also plan to encourage all patient speakers and attendees to participate in Community Round Tables, Content Hubs, and Engage & Exchange opportunities at the meeting.

2018 PE Track Highlights

In 2018, the PE track contains 13 sessions, and patients are associated with a total of 40 sessions across all tracks. Here are the key highlights:

  • One session focuses on ways to ensure diversity and inclusion from a patient engagement perspective to ensure that diverse communities have access to effective and safe therapies that meet the needs of all patients.
  • A Hot Debate on Benefit/Risk will also discuss the way regulators, companies, and patients view this topic, as well as highlights about an international initiative that is setting standards for patient preferences.
  • Another session focuses on where we are today with successes and challenges of patient-focused medicines development. This session will cover the good, the bad, and the ugly through shared learning that will continue to advance the field of Patient Engagement.
  • Another session will discuss the differences between patient observation versus patient engagement from company, vendor, clinician, and patient perspectives.
  • The Elephant in the Room will discuss the importance of connecting patient advocacy with compliance and legal processes to help develop proactive patient plans. Discussions will focus on ways to measure internal cultural changes.
  • A session on Metrics will highlight ways to assess value by incorporating impact on patient communities and Results of Patient Engagement (ROPE).

We are all learning together, and we hope that you will join us in these fascinating sessions to find wisdom and opportunities for dialogue that inspire and drive you forward in the changing world of Patient Engagement. See you at the 2018 DIA Annual Meeting!