Project Summary
Background: Social media has enormous potential for patients and other stakeholders contemplating patient-centered outcomes research (PCOR), but it also carries risks. On the one hand, social networking platforms like Twitter, Facebook, and blogs are great equalizers where the consumers of content (e.g., patients) can also be producers of content. Social media gives everyday people access to individuals and institutions with whom they may be unlikely to communicate otherwise, such as doctors and researchers. Patient research priorities can be identified, patient research partners mobilized, study participants recruited, and research findings disseminated via social media in faster and cheaper ways than traditional approaches. On the other hand, bits of inaccurate information may spread like wildfire on social media platforms, thereby perpetuating untruths that place individual and public health at risk. Currently, the menu of social media platforms is under-utilized in healthcare research. Many patients and clinicians may not be aware of the ways in which networking platforms such as Facebook, Twitter, and blogs can be used to identify and understand what research topics are most important to patients, what decisions matter most to patients, what factors contribute to health-related quality of life, and what gaps may exist in patients’ understanding of treatment options. Social media and networking platforms can also aid in disseminating evidence-based health information.
Proposed Solution: The Social Media and Research Toolkit (SMART) and Conference aims to develop best practices for using social media and networking sites to raise research questions, engage in open dialogue between patients and clinicians, disseminate evidence-based information, and match patients with research opportunities. The project will focus on spondyloarthritis as a pilot for this new engagement approach with the aim of developing a framework that can be employed for other chronic disease conditions.
Objectives:
- Identify spondyloarthritis (SpA) patients and other stakeholders who are active on social media and interested in becoming partners in research to help create a toolkit of best practices for social media engagement in health research.
- Develop a toolkit with resources for SpA patients and clinicians interested in using social media as a platform for research engagement. The toolkit will be replicable for other diseases or conditions.
- Conduct SMART conference that brings together SpA patient participants, clinicians, and researchers to pilot and discuss the SMART toolkit.
Activities: Training of SpA patients as research partners, development of SMART toolkit, and implementation of multi-day SMART conference.
Projected Outcomes and Outputs: Toolkit and conference agenda framework for social media engagement in research that can be used by other patient groups.
Patient and Stakeholder Engagement Plan: Patients will be recruited from the CreakyJoints community and identified by other project collaborators.
Project Collaborators: Patient and clinician partners with advisory input from National Psoriasis Foundation and Spondylitis Association of America in co-developing the SMART Toolkit and Conference.