A New Framework: Primary and Secondary Patient Engagement

Patient engagement is advocated widely across health systems worldwide, but what we mean by “engagement” differs greatly depending on context. Consider two scenarios: a patient working with her doctor to decide on a cancer treatment, and a patient representative helping design a cancer research trial. Both fall under “patient engagement,” yet they involve distinctly different roles and impacts. We should start distinguishing primary from secondary engagement to clarify discourse and improve evaluation and implementation.

The Problem: One Term, Multiple Levels of Involvement

In current literature and policy, patient engagement is an umbrella concept encompassing everything from patients managing their own care and participating in research studies to patients helping shape health services and research. As a researcher and an educator in participatory methods, I often discuss patient engagement with various researchers and when asked if they engage patients in their research, not seldom they respond: “of course we engage patients, they are participants in our studies”. That is of course not the type of engagement I mean with my question, but rather engaging patients in the design of the studies, for example to help with the research questions, outcome measures, recruitment strategies etc. The lack of nuanced terminology for these differences is problematic. 

We know that patient engagement is important. For example, a scoping review investigating the engagement of patients in their care, found effects on health outcomes, treatment adherence, and selfcare¹. In parallel, a study of patient engagement in connection with a clinical study of women with advanced breast cancer found that engaging patient representatives to assist in the design of the study improved recruitment and retention². 

Despite growing evidence of benefits in both domains, we often use a single phrase – “patient engagement” – to describe these fundamentally different forms. This can lead to misunderstandings. For example, a hospital might boast of great patient engagement because bedside decision-making is patient-centred, yet that same hospital may have no patients involved in hospital governance. Without terminology to separate these dimensions, such gaps remain obscured.

Defining Primary vs. Secondary Engagement

The key gap is the absence of labels to differentiate engagement in one’s own health decisions from engagement in broader system decisions. Some frameworks use terms like “patient involvement in research” or refer to “public involvement” versus “patient experience,” but a simple, widely adopted distinction is missing. 

I propose delineating two modes of engagement: 

Primary patient engagement: patients’ direct involvement in decisions about their own health and care.  This corresponds to activities like shared decision-making, self-management, and patient–provider partnership in clinical encounters, or participating in research studies. It is fundamentally about empowering the individual patient in their personal health journey.

Secondary patient engagement: patients’ involvement in the design, governance, and evaluation of healthcare or research beyond the individual level. This corresponds to patients acting as partners in a broader context – for example, as advisory board members, patient representatives in hospital committees, or in research teams. It treats the patient (or informal caregiver) as a stakeholder with experiential knowledge and expertise that can inform improvements in services and activities that affect many.

This terminology builds on existing concepts. For instance, “patient and public involvement (PPI)” in research is essentially secondary engagement, while “patient experience” and “activation” initiatives mainly relate to primary engagement. The contribution is a simple phrasing that keeps the patient at the centre of both terms and intuitively ranks them by scope (primary = pertaining to oneself; secondary = pertaining to the system).

Implications – Bringing Clarity to Engagement Efforts

Using primary/secondary engagement as a framework can advance both scholarship and practice. Researchers can categorize study scopes more clearly. A systematic review of patient engagement interventions could specify whether it examines primary engagement outcomes (e.g., impact on individuals’ health outcomes) or secondary engagement outcomes (e.g., impact on health services quality or research relevance). This clarity is needed – Sagen et al. (2023) found that many studies of system-level engagement (the “secondary” type) report only subjective or process outcomes (like patients feeling valued) and noted a dearth of studies evaluating hard outcomes of such engagement³. Recognizing secondary engagement as its own domain could spur more rigorous assessment of its impact on healthcare systems.

For practitioners and policy-makers, distinguishing primary and secondary engagement can help allocate resources and training appropriately. To improve primary engagement, investments might be made in communication training for clinicians, decision aids for patients, and policies that encourage shared decision-making. To boost secondary engagement, efforts could include establishing patient advisory councils, providing orientation and support to patient representatives, and flattening power hierarchies in committees. Indeed, evidence suggests that clear roles, representativeness, and training facilitate effective secondary engagement. By measuring progress in each category, organizations can identify specific gaps – one hospital might discover strong primary engagement but weak secondary engagement, while another sees the reverse – and tailor their improvement strategies accordingly.

Introducing the terms primary engagement and secondary engagement offers a concise way to articulate and tackle the current ambiguity in patient involvement discourse. These terms acknowledge that engaging patients in personal care and engaging patients in the broader health system are interrelated but distinct objectives. Both are essential to the vision of effective and efficient learning health systems⁴. 

The purpose of primary engagement is to engage and empower individuals in their care and selfcare, aiming to improve health outcomes. In contrast, the purpose of secondary engagement is to ensure that patient voice shapes research and policy, aiming for studies and services that align with patients’ needs and values. For patient engagement to mature as a field, we must be able to diagnose where we are succeeding and where we are falling short. Adopting this primary/secondary framework can help clinicians and researchers to better theorize engagement and guide empirical studies, and it can help health system leaders to implement more balanced patient engagement strategies. In short, it provides a clearer map for the journey toward truly partnership-driven healthcare, ensuring no aspect of engagement is overlooked or mislabelled.

By using precise language, we can better ensure that the promise of “patients as partners” is fulfilled at both the bedside and the boardroom.

References

1.                   Marzban S, Najafi M, Agolli A, Ashrafi E. Impact of Patient Engagement on Healthcare Quality: A Scoping Review. J Patient Exp. 2022;9:23743735221125439. doi:10.1177/23743735221125439

2.                   Vogsen M, Geneser S, Rasmussen ML, Hørder M, Hildebrandt MG. Learning from patient involvement in a clinical study analyzing PET/CT in women with advanced breast cancer. Res Involv Engagem. 2020;6(1):1. doi:10.1186/s40900-019-0174-y

3.                   Sagen JS, Smedslund G, Simonsen AE, et al. Patient engagement in the development and delivery of healthcare services: a systematic scoping review. BMJ Open Qual. 2023;12(2):e002309. doi:10.1136/bmjoq-2023-002309

4.                   Menear M, Blanchette MA, Demers-Payette O, Roy D. A framework for value-creating learning health systems. Health Res Policy Syst. 2019;17(1):79. doi:10.1186/s12961-019-0477-3