Patient Engagement in Workers’ Compensation

By Carlos Luna

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 WorkCompCentral’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 wellbeing. For this the industry should be complimented.  


  1. The FDA unfortunately does not provide grants to patient advocates to speak, and travelling from California to DC is very expensive. This is one reason why there were only a handful of patient advocates who attended the PEAC meeting, and most attendees were from industry. I was scheduled to speak but had to unfortunately cancel due to the expense. This meeting was called a patient engagement meeting, but most of the speakers and attendees were from industry. I am happy to read Workcompcentral is providing some grants to for IW's to attend their award ceremony. I would like to see them and CAAA go further and allow patient advocates to attend their educational seminars or even just view their online seminars without charge, if they are actively volunteering in any way to help other injured workers . It is very difficult to help other injured workers without having a basic understanding of the maze we have in the CA WC system. I have receive grants to attend and engage in seminars that deal with general issues relative to my patient advocacy, but I have not had the same experience within the work comp world. I was provided tickets to attend the complaud award ceremony twice. I appreciated it very much and miss David Depoalo, who was on my opinion also a patient advocate for injured workers. He always treated me with kindness and respect. (California injured worker patient advocate)

  2. The reason I haven’t spoken out is because I only have a rudimentary understanding of worker’s comp. I think you’d have to look at worker’s comp as a whole before you can make any drastic changes.

    1. It is very difficult for injured workers to learn about the industry when seminars and online classes are expensive and many are living off of a limited income. There are classes offered once a month at the WCAB, however the information is very basic. I read the information on the states website that is free. It is also difficult to appeal UR denials when ODG and ACOEM charge yearly memberships just to have access to treatment guidelines. MTUS and chronic pain guidelines are on the states webpage, but they are very limiting and really do not cover patients who have multiple, complex injuries. This is another reason why this UR and IMR paper review is so unfair to injured workers. Very difficult to fight treatment denials when you are barred financially to the info needed to appeal. The situation is only compounded by the insurance industry's blatant misuse of guidelines, and who would know if they do not have access to these guidelines? In my opinion the FDA and also the California insurance industry only want to hear stories of success and not issues patients bring forward of the severe problems they are having. Just FYI on some of the patient advocates who speak at the FDA, some of them are paid by industry to forward industries agenda. They speak to loosen regulations on industry, which ultimately harms patients. I do give Workcompcentral credit as they will report on problems injured workers are having. David DePoalo wrote several blogs on some of these problems, one called Vultures On Both Ends is one example of this.(California Injured Worker Patient Advocate).

    2. Your comment does explain my experience. I really wish I could get involved, but I don’t know where to start.


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