As the nation deals with ramifications of the coronavirus pandemic, PCORI and its funded research teams are adapting everything from the questions they seek to answer to the way they conduct activities. In terms of patient and stakeholder engagement, most in-person activities have transitioned to a virtual format to accommodate physical distancing protocols.

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Fortunately, for people unsure how to best engage in this new, virtual environment, a rich and growing trove of information generated and shared by PCORI awardees is available in our Engagement Tool and Resource Repository. The searchable, peer-to-peer repository includes more than 300 resources, and this blog spotlights three tools that can help research teams navigate this uncharted territory.

“We need to start thinking of creative solutions for our work. While the virus is stopping a lot of activities and functions, it cannot stop research because we have to find answers to these newly emerging and urgent problems,” said Shilpa Venkatachalam, PhD, MPH, Associate Director of Patient-Centered Research at the Global Healthy Living Foundation.

Social Media and Research Toolkit

Venkatachalam led the Social Media and Research Toolkit (SMART) Eugene Washington PCORI Engagement Award, which developed best practices for using social media and networking to raise research questions, engage in dialogue between patients and clinicians, disseminate evidence-based information, and match patients with research opportunities. Her team engaged with CreakyJoints, an online community focused on arthritis.

In conversations with colleagues and patients within the CreakyJoints community, “something that came up over and over again was the use of social media in research,” she said. “How can we leverage social media in a responsible way for multi-stakeholder, patient-centered research?”

That question generated her team’s Engagement Award. Through multiple calls, an online training for patients to become partners in research, and an in-person workshop, the project team of patients, clinicians, and other stakeholders created a toolkit of best practices for leveraging social media to be used during all phases of research, from prioritizing questions through dissemination of results.

“We explored how to build an engaged community using social media, which can, among other things, identify research topics of interest. We also looked at how to create instruments to conduct research that can be deployed on social media, how to recruit study participants that you might not be able to reach through traditional methods. And finally, we dug in to how to disseminate results on social media,” she said. Important in all of this was engaging in conversations around how to maintain and follow protocols of privacy and confidentiality.

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Designed by patients, doctors, and technical experts in the field of rheumatology, the toolkit focuses on spondyloarthritis, but can be easily adapted for use across conditions or areas of health care.

“We engaged a lot of patients who have experience leveraging social media as part of online communities, so we asked for a lot of advice from them,” Venkatachalam said. “So much focus is on how to get patients involved as partners in research, but it’s equally important to think about how to get researchers and clinicians to adopt a patient-centered model where patients aren't just passive participants, but are active in shaping research from start to finish.”

Using Social Media in a Long-Term Research Project

The PCORI-funded RadComp Trial based at the University of Pennsylvania is comparing two types of radiation therapy—photon therapy and proton therapy—for women with breast cancer needing radiation to the center or left side of their chest, where there is a risk of heart damage from incidental radiation exposure.

The research team is observing groups of patients who receive photon and proton therapy for 10 years to find out whether either type of therapy produces better outcomes and fewer side effects.

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Because of the study’s duration, the research team needed to come up with creative ways to keep the study relevant. The team also needed ways to disseminate gentle, periodic reminders to study participants to fill out surveys. Dana Goodlett, MPH, MA, Research Engagement Officer at the University of Pennsylvania School of Medicine, developed the RadComp Social Media Proposal, which outlines the breast cancer project’s efforts. It also includes a sample content calendar that can help research teams plan a content mix to keep their study top-of-mind for stakeholders.

“Periodic posts help keep the study in people’s minds if they are following us,” Goodlett said. “It’s a reminder that the study still exists, that we’re still going. If we didn’t have such a thing, it would be really easy to lose track that the study is ongoing.”

The social media plan includes sections defining audiences, objectives, and strategies for social media outreach, as well as plans for risk management and triaging privacy issues that may arise. The guide also includes a sample content calendar, planning for three months of social media posts. In these virtual times, this tool can provide a template to help other projects envision ways to interact with key stakeholders and study participants.

Goodlett said while the plan took substantial time and resources to formulate, the workload became much more manageable once the plan was implemented. That’s why she was excited to share it in the PCORI repository. “It took a while, and that’s why I think this tool will be helpful for other studies,” she said. “It can help streamline some of the issues and questions that I had to spend a lot of time thinking about because no one else had.”

She also said she’s seen many projects make a big social media push at the beginning of a project only to fall off over time. “Being consistent is important, and with your particular content mix—you’re unique as a page but you don’t want to fall off. I try to post at least once or twice a week at minimum.”

Engagement in a PCORnet Study

If you’ve followed PCORI over time, you’ve likely read about the PCORnet Bariatric Study, which used data from PCORnet^®, The National Patient-Centered Clinical Research Network, to study outcomes among nearly 50,000 patients who underwent three common weight-loss surgeries.

Karen J. Coleman, PhD, MS, a Research Scientist at Kaiser Permanente, led the PCORnet Bariatric Study’s patient engagement efforts, which included creating a toolkit, Stakeholder Contributions to Scientific Manuscripts and a Web-Based Platform for Engaging and Connecting Patients & Caregivers, available in the PCORI repository. The tool, a video, discusses how to include patients as published authors in the scientific writing process, and includes tips for using a web-based platform for engaging and connecting patients and caregivers.

Including patients—who are generally unfamiliar with the scientific writing process and the jargon that comes with it—is unusual in health research. “A core principle of our study was that the patients were co-investigators, people whose contributions were as valuable as the scientists working on the project,” Coleman said. “So, we really wanted to include patients as named authors in our publications.”

After sharing tips for ways to bring patients into the writing process, the tool pivots to offer thoughts on how to incorporate SmartPatients, an online community platform, to boost engagement across the study’s 41 sites.

Because the project was spread among so many sites across the country, the team also created branded templates that could be gently customized for each site. This helped strike a balance of having a cohesive branding strategy while allowing the sites to use text that best suited their audience.

“We had a centralized place to post things and to make requests for materials to be developed, and then when we had such personal relationships with all of our stakeholders across the country at the different sites, they knew who to go to when they needed something,” Coleman said. “We would make sure that they got a branded set of materials.”

Many Avenues for Keeping in Touch with Stakeholders

The three tools highlighted in this blog are just a sample of ways to optimize online connections with stakeholder and patient partners. Other ideas include sending study update newsletters or targeted postcards. We encourage PCORI-funded awardees to share engagement resources as they adapt their methods of engaging during the pandemic by sending submissions to [email protected].