Use of Photovoice to engage stakeholders in planning for patient-centered outcomes research

Abstract

BackgroundResearch is needed to inform patient and provider decisions about how to best care for patients who go to the emergency department with complaints of chest pain when their symptoms are due to anxiety rather than a heart problem. However, this research may not be a high priority due, in part, to a lack of awareness for the severity of anxiety symptoms and the impact of anxiety on peoples’ daily lives. In this commentary article, we highlight the use of Photovoice as a unique method to share patients’ lived experience of anxiety with providers, researchers, and health system leaders.Main textA brief background on Photovoice methods, the process of patient partner involvement in Photovoice, and the project’s Photovoice results (posters, photos and captions) is presented.ConclusionPhotovoice achieved its intended effects of increasing awareness of all stakeholders about the burden of anxiety in patients’ lives and the imperative of improving emergency department care for anxiety. This resulted in increased participation in a multi-stakeholder research partnership, critical health system support that included costs to the health system associated with implementing interventions to be tested, and submission of a patient-centered outcomes research proposal that is currently under review. In addition, Photovoice had positive benefits for participants including a therapeutic effect, may have increased group cohesion, and empowerment of patients as partners in the research process.

A patient and public involvement workshop using visual art and priority setting to provide patients with a voice to describe quality and safety concerns: Vitamin B12 deficiency and pernicious anaemia

“…Photographs and creative outputs to give patients a voice have been used successfully in previous research 19,20 . Literature suggests that using photographs as a means of expression enables patients with mental health conditions to highlight issues that are difficult to put into words 19 .…”

Let Their Voices Be Seen

“…Adhering to photovoice methods described in the literature, analysis began during the critical dialogue. [7][8][9][10][11]13 In the 2.5-hour discussion, the moderator and a note taker kept track of themes as they emerged from the participants' discussion, continually checking with participants to form consensus. The final list of themes, which was discussed at the end of the session, was endorsed by all the participants.…”

“…Photovoice is a type of community-based participatory research that recognizes the need for partnerships between outside experts and community members. [7][8][9][10] Participants document their experiences with photography and journal entries. Then, in a group setting, they engage in a critical dialogue, like a focus group, in which they use their photographs to share perspectives about problematic issues.…”

“…Then, in a group setting, they engage in a critical dialogue, like a focus group, in which they use their photographs to share perspectives about problematic issues. [7][8][9][10] Through photovoice, participants can illuminate gaps in the knowledge clinicians have of patients' lives, allowing their voices to contribute to quality improvement efforts and address misperceptions. 7 Photovoice methodology has been used to explore the experience of living with SCD, but those studies are limited to children and adolescents.…”

“…[7][8][9][10] Through photovoice, participants can illuminate gaps in the knowledge clinicians have of patients' lives, allowing their voices to contribute to quality improvement efforts and address misperceptions. 7 Photovoice methodology has been used to explore the experience of living with SCD, but those studies are limited to children and adolescents. 9,11 In this study, we used photovoice to better understand the tacit knowledge of SCD adults, as well as their perceptions of living with SCD and seeking care in the ED.…”