DIA 2018 Global Annual Meeting

Patients Are No Longer Just Participants, They Are Partners
Patient Engagement Community Spotlight

Lisa Palladino Kim
Director of Capstone and Lecturer,
Rutgers School of Health Professions

Laura Kolaczhowski
Lead Patient Representative,

Harsha Karur Rajasimha
Senior Director,
Life Sciences for NTT DATA Services

Helen Kellar-Wood
Immunoscience Lead,
Diversity and Patient Engagement, Bristol-Myers Squibb


urrent digitization of patient health information via electronic medical records, data from clinical genomics, biomedical imaging, lifestyle and activity monitoring using wearables, social media, patient registries, emerging technologies of data analytics, and blockchain opens new opportunities to engage patients as important stakeholders in the biopharmaceutical drug discovery and development process.

Traditionally, the drug discovery and development process has engaged patients as participants, but not as partners. With its mix of advocates and industry members DIA’s Patient Engagement Community (PEC) offers thought leadership and practical experience in integrating patients as full partners.

What happened to the Year of Diversity in Clinical Trials? Over 75% of trial participants are Caucasian!

The lack of patient diversity in most clinical trials has been well-documented. Despite FDA declaring 2016 as the Year of Diversity in Clinical Trials, the majority of registration studies are conducted in Caucasian patient cohorts, as shown by the FDA’s Snapshot website. In the US, almost 40% of the population belong to a non-white minority, whereas the average participation in clinical trials is only 5% for African Americans and 1% for Hispanics. Ensuring diversity within a clinical trial cohort of patients is important, because genetic variation among Americans of different heritage has been shown to affect therapeutic and physiological responses to certain medicines. Pharmaceutical companies are being urged by the FDA to ensure that the medicines submitted for regulatory approval are based on clinically meaningful data, reflect the epidemiology of the disease, and is relevant to all members of the population.

Join PEC and help us discuss ways in which this issue can be addressed!

Who Are We?

DIA PEC members include patients and advocates from a broad array of populations and disease areas, including chronic diseases, such as multiple sclerosis, cancer, autoimmune disease, and pediatric conditions. Members from industry range from representatives of small biotech companies to large pharmaceutical drug developers. Our leadership committee mirrors our membership, so that each activity and initiative is co-created by patients and industry.

How Do We Contribute to DIA?

For the DIA 2018 Global Annual Meeting, DIA-PEC not only has 13 sessions specific to patient engagement but also interspersed patients and advocates across the program tracks. As “Patients Included” accredited conference, patients will be active contributors to the conference program. Conference topics include shared decision-making, diversity and patient benefit-risk assessment, as well as advances in technology, such as blockchain applications and the evolution of industry-advocacy collaboration models.

Our monthly All-Hands PEC meetings combine working sessions with learning opportunities. In 2018, expert presenters address current issues, such as Universal Patient Language – a presentation by Elizabeth Turcotte from Bristol-Myers describing design principles and sharing tools that improve communication with patients. Patient Advocates have led discussions about the tools and processes developed in collaboration with the pharmaceutical industry and regulatory agencies, and we have co-created webinars with other DIA Communities. For example, DIA-PEC joined the DIA Statistics Community on Getting the Question Right- Where to Begin, a webinar series exploring how to develop clinically meaningful endpoints that meet patient needs. Event dates, topics, and how to connect can be found on the DIA Communities website.

How Can You Participate?

We welcome new members and encourage you to jump right in to share your expertise. Start by signing up for the Patient Engagement Community. Post a blog, read an announcement, attend an All-Hands meeting, or contribute to a webinar. Join our network of talented professionals and help us move the conversation forward!


“DIA was one of our promotional partners for Racefor7 and helped engage with patients globally at the five event venues in the US and India as well as on social media to maximize the outreach and patient engagement.”

Harsha Rajasimha, Founder and Board Director

Organization for Rare Diseases India, USA

“The PEC membership for me is an excellent opportunity to network, learn, and share relevant activities across many different geographies and companies, including patient organizations and regulators. As part of the community leaders, the exposure to vast knowledge within the very friendly leadership team is invaluable. The emerging technology theme offering deeper partnerships with patients for end-to-end drug development is of keen interest to our industry. As a result, we are exploring learnings and are sharing best practices for virtual trials, wearables, and blockchain technologies. I am excited to be a part of this PEC, a DIA Community that is truly at the forefront of transformational patient engagement.”

Adama Ibrahim, Senior Clinical Operations Lead
and Women in Innovation UK Chapter Co-Lead


“I’m enthusiastic about working with DIA’s Patient Engagement Community to articulate the importance of the patient experience in all aspects of drug design, development, trials, and regulatory procedures. My personal advocacy is for multiple sclerosis and the iConquerMS patient-powered research network. Being part of PEC allows me to collaborate with advocates for other conditions as well as the greater drug industry. I became involved with DIA through the 2016 Patient Fellows program, l led a DIA 2017 patient advocacy panel session, and will be moderating another session at the DIA 2018 Global Annual Meeting.”

Laura Kolaczhowski, Independent MS patient advocate,
writer and researcher, and Lead Patient Representative