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Shilpa Venkatachalam, PhD: Prioritizing Patient-Centered Research in Autoimmune Diseases

Investigators believe it is important to understand the patient's perspective regarding vaccine concerns and combining that perspective with stakeholders to prioritize topics for future research.

Shilpa Venkatachalam, PhD, MPH, discusses the upcoming ACR Convergence 2022 presentation, “Priority Research Topics for Vaccine Uptake Among Adults with Autoimmune Conditions.” Venkatachalam, Associate Director of Patient-Centered Research at Global Healthy Living Foundation, CreakyJoints, focuses on how she and her team decided on which topics should be prioritized for patient-centered research, how the multidisciplinary steering committee was formed in an attempt to decrease vaccine hesitancy and improve vaccine uptake, as well as the next steps for her team.

Rheumatology Network: Why was it important for your team to prioritize topics for future patient-centered research?

Shilpa Venkatachalam, PhD, MPH: We're a patient-centered research and advocacy organization. We work with a community of patients who live with autoimmune diseases and inflammatory arthritis to bring the patient perspective into research. In this in this current environment, it's very important to make research relevant. The way to make research relevant is to bring in a multiple stakeholder perspective, which includes patients.

For this particular study, which was about vaccines, specifically vaccine-preventable infections, and people living with autoimmune diseases, such as rheumatoid arthritis and lupus, we know it's an established fact that people living with autoimmune diseases have nearly twice the risk of acquiring severe vaccine-preventable infections. These conditions are also associated with a higher risk of serious infection-related complications. This makes the autoimmune population a high priority group for vaccination. But ironically, even though this remains a high priority group, uptake remains relatively low for several reasons ranging from vaccine hesitancy, to lack of vaccine confidence, to concerns about their underlying condition. So, it was very important for us to understand, from the patient perspective, what concerns patients have when they think about vaccines that they should be taking, so that we could then combine their perspectives with other stakeholders to prioritize the right types of topics for future research.

RN: What were the methods that your team use to achieve this goal?

SV: There were a few different ways we went about this project. The first thing is we lead a highly productive collaborative called the autoimmune research collaborative (ARC) and it comprises 4 patient-powered research networks (PPRNs): ArthritisPower, which serves the inflammatory and non-inflammatory, IBD Partners (inflammatory bowel disease), Vasculitis PPRN (vasculitis), and iConquerMS (multiple sclerosis). We worked collaboratively throughout the pandemic. Even before that, we produced a significant amount of work and publications. We worked with this group, led this group, and conducted this particular study.

What we first did was we established a steering committee. The steering committee itself was comprised of clinicians, patients, patient advocates, and researchers, all of whom were associated with autoimmune conditions. We then did a scoping literature review and had a number of iterative discussions with our steering committee members to identify research topics regarding vaccine uptake and regarding vaccine hesitancy.

We then put together a list of topics for ranking and rating. And then we invited stakeholders to form a larger group, called the multi-stakeholder alliance, that included patient advocates, clinicians, researchers, pharmacists, vaccine manufacturers, policymakers, and regulators, and conducted what's called a was a modified Delphi exercise online. That included 3 reading rounds in 1 ranking round. We wanted to use the Delphi exercise­ (the American College of Rheumatology uses this as well) because the Delphi methodology is particularly useful to arrive at a consensus when you have different stakeholders involved and it's particularly helpful in the prioritization of topics.

Once we put together and received people's rankings and ratings through those several rounds that we deployed online, we then conducted a frequency analysis and comparisons across stakeholder groups. Then, we weighted ranking scores for each item and came up with a final list of topic priorities. We’re now putting together a manuscript and we'll be demonstrating which topics emerged as “the winners.”