The call to increase patient engagement to inform the development of standards and policies is gaining traction. The development of these standards ultimately helps improve health outcomes in workers’ compensation, and other health care influenced industries. Efforts to consistently collect and incorporate patient perspectives into the scientific process is becoming a priority for many. This is welcome news to all patients and patient advocates!
How important is patient input to ensuring the best possible health outcomes for ill or injured workers?
Understanding the importance of patient involvement in the composition of evidence-based Guideline Development Groups (GDG), The National Academies of Sciences, Engineering, Medicine (formerly the Institute of Medicine (IOM), included the requirement of patient input as one of its eight Standards for Developing Trustworthy Clinical Practice Guidelines in 2011. The standard directs guideline developers to incorporate patient involvement, at least, when formulating clinical questions and reviewing Clinical Practice Guideline (CPG) drafts. Former patients, patient advocates, or patient / consumer organization representatives qualify to participate in the GDGs under this requirement.
Accordingly, the requirement of patient involvement is included in AHRQ’s National Guideline Clearinghouse’s (NGC) assessment of submitted guidelines’ adherence to the academy’s standards of trustworthiness. Patient and public perspectives, along with multidisciplinary group participation and methodologist involvement, is measured by the NGC when grading the content developer’s GDG composition.
The newly energized push for patient engagement is prompting content developers aiming to align with National Academy standards to improve methods for soliciting, receiving, and incorporating patient and public input into the content development process. The American College of Occupational and Environment Medicine (ACOEM) accepts patient, and other stakeholder, input through an online portal to assist the development of its evidence-based medicine practice guidelines.
Patient Engagement beyond Content Development
Notable recent activity from the Food and Drug Administration (FDA) includes assembly of a Patient Engagement Advisory Committee (PEAC). A statement issued by the FDA explains the committee exists to support its efforts to broaden engagement with patients and deepen patient involvement in the administration’s regulatory activities.
More specifically, the initiative will seek patient perspectives for use across medical device design, clinical trial process, and post market evaluation. Additional guidance on patient preferences, such as tolerance of risk and patient point of view on benefits, will be used by the FDA to assess device benefit-risk profiles.
The administration can consider the systematically gathered patient preference information, in conjunction with its assessment of scientific evidence that demonstrates a device’s probable benefit outweighing its likely risks, to form its complete grouping of clinical and non-clinical testing.
Workers’ Compensation Continues its Efforts for Patient Engagement
Very few venues exist in workers’ compensation that facilitate direct engagement between industry vendors and patients. Perhaps the most visible platform today is WorkComp Central’s Comp Laude® Awards & Gala. Event participants advertise that Comp Laude’s most memorable moments typically occur when patients are involved in panel discussions. Event organizers have voiced their excitement about the overall positive impact patients have on the industry get-together.
Stemming from the mission and vision of the event’s late founder David DePaolo, Comp Laude® created a scholarship intended to create a path for direct engagement between the industry and its patients. The scholarship provides travel funds and covers lodging expenses along with conference registration for the patient and a guest. Several vendors, among them ReedGroup, are honored to have the opportunity to be sponsors of the scholarship fund.
Many have criticized the workers’ compensation industry for its numerous shortcomings, myself included. While it is important to acknowledge the industry has more work to do in the pursuit to increase patient engagement to improve health outcomes, it is equally important to acknowledge the progress gained by organizations whose corporate point of view regularly advocates for patients and their well-being. For this, the industry should be complimented.