Patient Engagement – The Forgotten Puzzle Piece to Creating Patient Reported Outcome Measures

Cytonn Photography (Unsplash)


By Stephanie Reischl & Rochelle Furtado

In North America, healthcare practices have adopted a patient centered model that emphasizes the partnership between the patient and their health care practitioner (HCP). This involves HCPs incorporating the specific needs of patients with their treatment goals, while ensuring the patient is engaged in decisions of their health. When patients have an active role in their care, health outcomes are greatly improved (1). Measuring health outcomes is done using tools such as patient-reported outcome measures (PROMs), which capture whether a treatment is beneficial from the patient’s perspective, and whether a treatment needs to be progressed or regressed. PROMs are helpful for more complex conditions with a multifactorial etiology, such as pain (2-4). Therefore, it is critical that researchers recruit a diverse research team that includes policy makers, clinicians and patient partners (patients with the specific condition) when developing PROMs for pain (2, 5).

Studies rarely report on patient engagement during the development of PROMs, and those that do, often miss opportunities to fully engage with patients (5). To gain more insight from a patient’s perspective, we had the pleasure of collaborating with a patient-partner, Linda Wilhelm, in the development of this article. Linda is the president and a founding member of the Canadian Arthritis Patient Alliance (CAPA), a grass-roots, independent patient organization. Linda has been an active advocate for healthcare access and quality of care for patients over the last 20 years. In terms of clinical perspectives incorporated into research, Linda has noticed that “Physicians seem to have ways to be able to provide input into research and into policy, but not patients, patients never seem to be a voice to be able to step up and say to somebody, you know, that’s not working.”

Shopify partners (Burst)

Benefits and Barriers to Patient Engagement

In recent years, steps have been taken by governments, funding bodies, and communities to encourage patient partners to be included on research teams. An example of this is the Chronic Pain Network (CPN) that combines clinicians, researchers, and patients to facilitate patient centered research. The CPN encourages patients to become patient partners on a project and to get involved in a variety of roles such as recruiting participants, consulting/piloting interventions, and writing summaries of the project, to name a few. Patient participation helps ensure that the research being conducted is relevant and valuable to the intended patient population. Patient partners can also collaborate with the research team to summarize or share the results with target audiences, especially to other patients and policy makers, who may apply the results to a health or community setting. However, there are still barriers that limit patient engagement such as time, funding, recruitment, patient compensation, and researchers’ skills for engagement with patients (6). These barriers can limit the inclusion of patient partners or result in low level patient engagement, which has been shown to have less impactful outcomes. Engaging patient partners early in the research process allows for thoughtful involvement in goal setting for the project to ensure the outcomes are meaningful for the intended patient population. Ultimately, including patient partners can lead to improved service delivery, policies, governance as well as patient and researcher education (7).

PROMs for Pain

Pain is defined as “an unpleasant sensory and emotional experience associated with, or resembling that associated with, actual or potential tissue damage” (8). Since pain involves subjective, psychosocial drivers in a patient’s experience, there is a need to include patient perspectives when developing pain-related PROMs. Engaging with patient partners in the development of pain PROMs ensures that psychosocial contributors that are meaningful to the pain experience can be measured and can encourage their use by patients. Using PROMs helps to bridge the gap between clinical interpretation and the patient’s experience. Clinicians may misjudge specific symptoms compared to the severity and quality of life (i.e., a conscious cognitive judgment of satisfaction with one’s life (9)) that is generally reported by the patient, which may lead to an incorrect treatment dosage. For example, the Numeric Pain Rating Scale (NPRS) is a commonly used outcome measure for patients to rate their level of pain from zero (no pain) to 10 (worst imaginable pain). While commonly used, NPRS ratings do not capture the full picture of a patient’s pain, as patients can have a mixture of drivers (i.e., emotional, socioenvironmental, etc.) that may be influencing their pain (10). Linda shared an analogy with us stating “the pain scale is like someone telling you that it’s 22 degrees outside but not telling you if it’s cloudy, rainy, sunny, or windy, it only gives a small picture”. It is important to acknowledging the context of a pain score and requires collaboration between clinicians, patients, and researchers to effectively create PROMs that capture the complexities of pain. Including the various perspectives in the development of the PROMs for pain may prevent discrepancies between the clinician and patient perspectives.

In our interview with Linda, she provided an example where patients may take extra steps to manage their pain that are not discussed with their physician. In this instance, patients were unable to receive an appointment with their physician to renew or modify their prescriptions. Linda was a patient partner on a committee of researchers, clinicians, and policy makers evaluating adverse effects of a drug. It appeared that the committee assumed patients would only follow the physician’s orders for medications. Linda questioned their assumptions, noting, “If you can get a prescription that’s going to help…without having to go into your doctor, you don’t think that patients are going to take that for as long as it’s working for them?” This was thought-provoking for the committee and was an example of the value a patient partner can bring to the discussion. Linda also expressed that sometimes patients do not think to tell their physicians they are taking over-the-counter medications, because of limited time with their physician and the perception that non-prescription medications are safe. Patients may also be unaware of the harmful interactions between over-the-counter and prescription medications. Unfortunately, these types of situations happen more frequently than we think, but patient’s access to PROMs may help prevent these.

Cottonbro (Pexels)

Empowering Patients Self-Management of Pain

Providing patients with PROMs gives them a tool that they can use for monitoring their pain, increase their engagement in their health, improve their knowledge about their pain, and influence overall pain management (11). PROMs can measure the contributors to pain, the impact on function, and the patient’s quality of life. Additionally, PROM can capture the preferences and goals for the patient that may help focus the conversation with their physician to facilitate shared decision making that enhances the safety of health care (12). Using PROMs can lead to more positive and efficient interactions with physicians to improve care (11). This may help prevent the need for patients to look for additional pain management strategies beyond the plan they decided on with their physician.

Initiating the Patient Collaboration

In the interview, Linda highlighted some strategies for more patient centered research. One strategy is to attend patient support groups “to just listen to what they’re saying and what their experiences are” to ensure that research questions are more applicable to patients. To engage a patient partner on the research team, the first step is identifying patients that you can approach with the proposed collaboration. Researchers can approach patients at support groups and/or visit websites for patient organizations such as CAPA to access their lists of patients. Once a patient partner has been identified, researchers can ask the patient if they are interested in a partnership. Linda stated that there are a lot of patients eager to share their experiences because they see how being involved in research can improve the quality of research and help fellow patients. Linda shared an additional benefit of early patient engagement that “patients engaged in patient-oriented research helps make the research translation process happen quicker.”

“To engage a patient partner on the research team, the first step is identifying patients that you can approach with the proposed collaboration” 

Ensuring Success with Patient Engagement

There are barriers and facilitators to producing high quality research that can smoothly transition into practice. The key is to have a strong collaboration between all stakeholders. Stakeholders are the individuals, organizations or communities that have a direct interest in the process and outcomes of a project, research, or policy endeavor (13). A diverse research team substantially advances research by having various perspectives contributing to the research goal and approach to overcome barriers towards implementation. While there is still room for improvement in how patients are incorporated into these diverse teams, Linda has noted that engaging patient partners in research and patient advocacy has progressed on a positive trajectory since her initial involvement in the 2000s. Hopefully, sharing Linda’s experience will inspire more researchers and clinicians to invest in patient partner collaborations, because the patient perspective is just as important as clinical and research expertise in the field of rehabilitation. Many organizations such as the Canadian Institutes of Health Research and CPN have excellent resources for those looking for additional strategies on how to best engage with patient partners (Table 1).  Engaging in these resources and taking the steps for patient engagement can improve the value of PROMs. Increasing the use of PROMs is a strategy that can be used to encourage patient centered care by directing conversations with their physician to encourage shared decision making that incorporates the patients’ individual needs (12).

Table 1. Resources with strategies to engage with patient partners

Resource Website link 
Canadian Institutes of Health Research
The Chronic Pain Network
Clinical Trial Ontario
Centre of Excellence on Partnership with Patients and the Public
Ontario SPOR Unit


The authors would like to acknowledge funding provided by Chronic Pain Network Knowledge Translation Grant which helped to fund this work.

Featured image by Cytonn Photography (Unsplash).

To refer to this article, it can be cited as:

Reischl S, Furtado R. Patient Engagement – The Forgotten Piece to Creating Patient Reported Outcome Measures. rehabINK. 2022:13. Available from:


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