Background There have been repeated calls to better involve patients and the public and to place them at the centre of healthcare. Serious clinical and service failings in the UK and internationally increase the urgency and importance of addressing this problem. Despite this supportive policy context, progress to achieve greater involvement is patchy and slow and often concentrated at the lowest levels of involvement.

Methods A selective narrative literature search was guided by the authors’ broad expertise, covering a range of disciplines across health and social care, policy and research. Published systematic literature reviews were used to identify relevant authors and publications. Google and hand searches of journal articles and reference lists and reports augmented identification of recent evidence.

Results Patients and the wider public can be involved at most stages of healthcare, and this can have a number of benefits. Uncertainty persists about why and how to do involvement well and evaluate its impact, how to involve and support a diversity of individuals, and in ways that allow them to work in partnership to genuinely influence decision-making. This exposes patient and public involvement (PPI) to criticisms of exclusivity and tokenism.

Conclusions Current models of PPI are too narrow, and few organisations mention empowerment or address equality and diversity in their involvement strategies. These aspects of involvement should receive greater attention, as well as the adoption of models and frameworks that enable power and decision-making to be shared more equitably with patients and the public in designing, planning and co-producing healthcare.

https://qualitysafety.bmj.com/content/qhc/25/8/626.full.pdf

From tokenism to empowerment: progressing patient and public involvement in healthcare improvement

Photovoice, as a community-based participatory action research (PAR) method, has gained immense popularity since Wang and Burris first introduced it in the early 90s, originally as “photo novella.” Developed as a component of their work with women living in rural farming communities of Yunnan province China, Wang and Burris used this method to assess women’s health and socioeconomic needs, in an effort to support improved reproductive health outcomes. Wang and Burris (1994, p. 179) explain that the purpose of photovoice “was to promote a process of women’s participation that would be analytical, proactive, and empowering.” It is undoubtedly the benefits this method provides to researchers, participants, and their communities as well as other stakeholders (such as service providers and policy makers) who have driven its popularity. However, alongside this popularity, is a growing concern regarding rigor in the method’s application. As Gubrium and Harper (2013, p. 73) caution, “the ‘user-friendliness’ of photovoice can lead to its misuse as a ‘quick-and-easy’ replacement for long-term ethnographic engagement and immersion in fieldwork contexts.” It is this realization that shapes current discussions of photovoice. If we are to promote the aims of research approaches such as, but not limited to, critical theory, postcolonial theory, social justice research, through the use of photovoice, we have an ethical imperative as researchers to ensure that the ways in which we engage in research with communities honor their wisdom and expertise. Part of honoring this wisdom and expertise requires us to facilitate critical reflection on structurally embedded experiences, and that the knowledge emerging from this reflection is both given a platform from which to be voiced and, equally important, amplified in ways that are heard. In this state of the method article, I review the theory and process of photovoice as a means of critically revisiting the intent and application of this method. I use this reflection to highlight contemporary critiques of photovoice. Concerns around power imbalances in the research context (Castleden, Garvin, & Huu-ay-aht First Nation, 2008), rigour of research components and related findings (Nykiforuk, Vallianatos, & Nieuwendyk, 2011), participant empowerment and engagement (Carlson, Engebretson, & Chamberlain, 2006), as well as meaningful dissemination of findings and the ways in which they inform change (Latz, 2017; Mitchell, de Lange, & Moletsane, 2017) are particularly relevant. This discussion of photovoice responds to these various concerns, adding to our thinking about the use and implementation of the method.

https://journals.sagepub.com/doi/pdf/10.1177/1609406918757631

Thinking Critically About Photovoice: Achieving Empowerment and Social Change

In this time of reconciliation, Indigenous researchers-in-relation are sharing research paradigms and approaches that align with Indigenous worldviews. This article shares an interpretation of the ...

https://journals.sagepub.com/doi/pdf/10.1177/1609406918812346

An Application of Two-Eyed Seeing: Indigenous Research Methods With Participatory Action Research:

Despite decades of evidence showing that institutional and interpersonal racism serve as significant barriers to accessible healthcare for Aboriginal and Torres Strait Islander Peoples, attempts to address this systemic problem still fall short. The social determinants of health are particularly poignant given the socio-political-economic history of invasion, colonisation, and subsequent entrenchment of racialised practices in the Australian healthcare landscape. Embedded within Euro-centric, bio-medical discourses, Western dominated healthcare processes can erase significant cultural and historical contexts and unwittingly reproduce unsafe practices. Put simply, if Black lives matter in healthcare, why do Aboriginal and Torres Strait Islander Peoples die younger and experience ‘epidemic’ levels of chronic diseases as compared to white Australians? To answer this, we utilise critical race perspectives to theorise this gap and to de-center whiteness as the normalised position of ‘doing’ healthcare. We draw on our diverse knowledges through a decolonised approach to promote a theoretical discussion that we contend can inform alternative ways of knowing, being, and doing in healthcare practice in Australia.

BlackLivesMatter in Healthcare: Racism and Implications for Health Inequity among Aboriginal and Torres Strait Islander Peoples in Australia

Indigenous youth continue to live with a socioeconomic and political legacy of colonization and marginalization, confronted by environments harmful to their psychosocial development. Resource strai...

https://journals.sagepub.com/doi/pdf/10.1177/1609406919840547

Spaces & Places: Understanding Sense of Belonging and Cultural Engagement Among Indigenous Youth:

This article explores what it means to engage youth in meaningful dissemination of research findings. To do so, the authors (a group of academic researchers and youth collaborators, aged 14–18) con...

https://journals.sagepub.com/doi/pdf/10.1177/1609406917717345

Jenny Reich

Papers

In This Together: Relational Accountability and Meaningful Research and Dissemination With Youth