Written by Anja Minheere. Anja is a patient with a chronic condition (MS), a Patient Advocate and PhD candidate interested in power issues in patient and public involvement.
Being a patient advocate or representative in health innovation projects and research is a journey filled with usefulness, satisfaction, and even fun. However, it is important to acknowledge that it is not always a walk in the park. The challenges we face are often complex and multifaceted. For instance, we might struggle with defining our roles and responsibilities within the project. We often find ourselves grappling with questions like: What are our mutual expectations? Who holds the decision-making power? This is the reason I decided to devote my research to patient and public involvement (PPI) in healthcare collaboratives.
Patient involvement is a vital component of modern healthcare, driven by democratic and ethical values. As healthcare costs continue to escalate and patients demand better care, healthcare organisations are adopting innovative practices to meet these new challenges. Healthcare collaboratives are emerging as a new approach to managing costs and enhancing the quality of care through patient involvement. An example of such pioneering work is “Blue Care” in the Netherlands, an initiative in which health care organisations, patient organisations and the health care insurance providers have committed themselves to achieving the Quadruple Aim goals and pledged that they will prioritise population health above their organisational goals. Patient representatives are being recognised for their critical role in value creation. However, despite this, there is a lack of research on the influence and power of patients involved in such healthcare collaboratives. To address this gap, I conducted research on PPI in healthcare collaboratives. In this blog, I will explore why we need to go beyond individual empowerment towards investing in building trust and relationships to allow for meaningful collaboration.
Individual empowerment and group dynamics
Results of my study have shown that patient representatives who take part in healthcare collaborations can feel empowered. In one of the observed collaboratives, the patient representative reported feeling a high level of self-efficacy, stating, "This work has given my recovery a boost because I have to look at my illness with a helicopter view." This individual empowerment is necessary for patients to collaborate with other stakeholders and achieve co-creation. To accomplish this individual empowerment, patient representatives must be capable, representable, and qualified. Establishing a patient participant profile can help select the right representative and clarify their role in the health collaborative, as it outlines criteria such as what skills are needed to complete or contribute to specific activities.
Unfortunately, I discovered that individual empowerment does not imply that patient representatives are empowered within the group dynamics. For example, patient representatives may face challenges in convincing others of their added value. As one representative noted, "I have to 'fight' for my position."
Importance of trust and equity in group dynamics.
My research also highlighted that interpersonal relationships constitute a crucial hidden aspect of building trust. This aspect refers to the unspoken, often subtle interactions and exchanges between stakeholders, which can significantly influence the level of trust within a collaborative. For instance, in one observed collaborative, tensions between a health professional and a health provider, stemming from past unsuccessful collaborations, hindered the group’s progress. I observed that the frequency of interrupting the patient representative by the project manager or other stakeholders was significantly higher than the frequency other stakeholders are interrupted, especially since the two stakeholders in disharmony needed a lot of time to make their point repeatedly. This underscores the need for more dialogue and inquiry to examine how patient involvement is enacted and positioned within healthcare collaboratives. A topic that warrants further research.
The importance of trust and equity in meaningful collaborations cannot be overstated. It is not merely about securing adequate funding but about cultivating a culture of mutual trust. This requires careful consideration of inter-relational dynamics and interpersonal relationships. When stakeholders encounter unresolved issues, the trust-building process becomes intricate, underscoring the urgency of addressing these issues. To ensure genuine patient participation, all stakeholders must feel the gravity of their role and be unwavering in their commitment to building enduring relationships, engaging in authentic dialogue, and embracing mutual and reciprocal learning.
“Empowering patient representatives is an important step, but it is not enough for meaningful collaboration.”
In order to support meaningful patient involvement, project leaders should aim to invest in trust-building between stakeholders involved with a project and provide a profile of the patient they want to involve in the project/research.
Remember, when we work together with a sense of empowerment and trust, we can accomplish great things. The key to success is recognising that individual empowerment is only the first step towards creating an empowered group. Let's commit to building strong, positive relationships that foster trust and collaboration. The result will be an empowered patient representative that can contribute in meaningful collaboration.
To read more about my research, you can access my open-access paper here: Patient Power and Empowerment: Mitigating Elements of Valuable Patient Participation in Healthcare Collaboratives
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