Involvement of end-users and professional practice

What is stakeholder engagement?

Stakeholders to your research project can be patients, (fellow) professionals, members of the public, commercial companies, public institutions, etc. To distinguish them from your project partners, you can think of them as end-users of your project’s results or products. Synonyms for engagement are (public) involvement or (patient) participation.

In a health context, The US Patient-Centered Outcomes Research Institute (PCORI) defines engagement in research as “The meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process—from planning the study, to conducting the study, and disseminating study results.”(1) So, the research is carried out ‘with’ or ‘by’ members of the target group rather than ‘on’, ‘about’ or ‘for’ them.(2)

Why is stakeholder engagement in research important?

Although the ‘science of engagement’ (1) is still young, there is a growing consensus that stakeholder engagement, if taken seriously and professionally, can lead to more relevance, quality, safety and sustainability of research products (3). Active stakeholder participation may lead to improved appropriateness and deliverables that better fit the stakeholders’ needs. Therefore, funding agencies and journals increasingly value patient involvement in their evaluation criteria and author guidelines. For instance, authors of BMJ manuscripts must include a patient and public involvement statement explaining how they involved stakeholders in their research. Similarly, In The Netherlands, the main healthcare research funder, ZonMw, actively stimulates end-user engagement in their projects. (4,5)

How to engage stakeholders?

Stakeholders can be involved across a spectrum of research activities, from suggesting the most relevant health outcomes, via assessing the patient information letter, to helping implement study results. The ladder of engagement distinguishes various levels of stakeholder involvement (6): listen, think along, advise, be a co-worker or (co-)direct the project. The higher a stakeholder is on the ladder, the greater his or her influence on decision making. However, sustained and active stakeholder engagement, especially at a higher level, is challenging (7). Different expectations about deliverables, roles and responsibilities may disrupt active stakeholder involvement. Since motivations and incentives may differ and change over time, it is important to explore stakeholders’ needs and to agree on their roles. Important prerequisites and caveats are summarized in Een 10 voor Patiëntenparticipatie (Dutch) (5). Finally, a handy tool to structure various engagement activities is the participatiematrix (Dutch) (8), which, although designed with patients in mind, easily extends to other types of stakeholders.

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