Use of Photovoice to engage stakeholders in planning for patient-centered outcomes research
Research Involvement and Engagement volume 5, Article number: 39 (2019)
Research 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.
A 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.
Photovoice 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.
Plain English summary
People with conditions like anxiety may know a lot about what it is like to live day to day with anxiety, but some of that knowledge will be hard to put into words in a way that others can understand it. Photovoice is a method which can help people share that tacit knowledge with others. Photovoice involves using a camera to take photos that match a thought or feeling about anxiety and develop a photo caption to share meaning of how the photo relates to what they’re going through. In this project, people with anxiety used Photovoice to get anxiety seen as something serious that needs to be treated just as you would treat a physical health problem. We [Photovoice participants] were motivated by a desire to improve care for everyone that goes to the emergency department due to fear of having a heart attack, and are sent home with no treatment or help when anxiety was the actual cause of our symptoms. Coming back to the ED for false alarms of heart attack wastes time and money that could be used to get patients the help they truly need the first time around. Photovoice added a face to the numbers of people this happens to, and worked to get people to talk about it and figure out a solution. Because they trusted us and saw where we were coming from, our opinions about things like what treatments should be involved [in a research study] were important. Being part of the solution and not the problem is good. Feeling like you’re not the only one who goes through this is good.
This article highlights our unique use of Photovoice methods to engage stakeholders in patient-centered outcomes research (PCOR) focused on informing treatment options for persons with anxiety disorders seeking care in the Emergency Department setting. As defined by the Patient-Centered Outcomes Research Institute, PCOR “helps people and their caregivers communicate and make informed healthcare decisions, allowing their voices to be heard in assessing the value of healthcare options” . During the planning phase of the research, a small group of patients, providers, and researchers met monthly over a six-month period to discuss patients’ experiences of health and healthcare related to anxiety. These discussions informed a comprehensive view of the problem and needed steps toward a solution . In brief, symptoms of an anxiety disorder can be perceived by patients as a heart attack or other serious threat to health and cause patients to seek care in the ED. However, after tests have ruled out a heart attack or other serious event, patients are commonly discharged without discussion of anxiety as a potential underlying cause of symptoms or a referral for further evaluation and treatment of anxiety. Greater awareness of anxiety and prioritization of the research topic was needed, particularly among emergency medicine providers who could not be expected to appreciate the functional impairments of anxiety on work, family and social life during brief emergency department encounters. Hence, we initiated the Photovoice project to increase awareness of anxiety by documenting the lived experience of anxiety disorders and their impact on peoples’ lives and ensure that voices of patients were heard and valued. A second purpose was to create an opportunity for discussions about health and healthcare related to anxiety by disseminating Photovoice results among the growing multi-stakeholder research partnership.
This paper will provide a brief background on Photovoice, describe our process of patient-partner involvement in Photovoice, share the project’s Photovoice results (posters, photos and captions), and discuss the impact on stakeholders and stakeholder engagement in research. Engagement activities described in this paper were funded under a Pipeline to Proposal (P2P) Award by the Patient-Centered Outcomes Research Institute®. The overall purposes of the P2P award were to develop a multi-stakeholder research partnership, build capacity for patient-centered outcomes research, and inform a subsequent research application. In addition, the P2P award specifically prohibited use of funds for research purposes. Engagement activities, including the Photovoice project, performed under the P2P award were deemed non-human subjects research by our institutional review board. Toward that end, the results of the Photovoice project should not be interpreted as research.
Sharing information through the use of visuals (particularly photography) has been used in diverse fields such as public health, medicine, anthropology, sociology, education, and psychology to promote social justice and understanding of community experience for more than 50 years (; [4,5,6];). Photovoice methods used today are based on the foundational work in participatory action research of Caroline C. Wang and colleagues in the 1990s [6,7,8,9]. Within this context, Photovoice asks people to represent their lives, point of view and experience using photographs and narratives (Fig. 1).
Photovoice has been applied to a wide variety of settings, people, and issues ranging from development needs of women in rural China  to community re-integration after deployment (add NOLA reference), and the experience of homelessness . Researchers have also used Photovoice to create awareness of lived experience with chronic conditions and disabilities such as acquired brain injury , asthma , HIV/AIDS , mental illness , spinal cord injury , substance use disorders , and tuberculosis . Applied to health and healthcare, Photovoice can help to illuminate gaps in clinical knowledge, contribute to efforts to improve quality and efficiency of care, and identify patient-centered goals and possibilities for healing . The process of talking about participants’ photographs can help to bridge the discipline gap between patients and clinicians, bring out tacit knowledge and understanding, and generate common understanding of issues, contexts and solutions .
Individuals who participated in the Photovoice project were recruited as patient partners from initial listening groups conducted with adult patients who had lived experience of receiving care in the ED for low-risk chest pain and anxiety. The term patient partner specifically applies to patients engaged in the planning, conduct, or dissemination of research and should not be confused with the role of patient as a research subject. Six patient partners (AP, AB, CM, LS, MC, VC) along with the P2P Project Lead (JNC) and an expert Photovoice consultant (LL) embarked on a six-week Photovoice project to document the impact of anxiety on peoples’ lives. The patient partners who chose to participate were diverse in terms of age, gender, race, and occupation. All patient partners screened positively for high levels of anxiety on the Generalized Anxiety Disorder 7-item scale (GAD-7). For the purposes of engagement activities, self-report of anxiety was not confirmed as the GAD-7 is aligned with diagnostic criteria for generalized anxiety disorder and also has good operating characteristics for panic disorder, social anxiety disorder, and post-traumatic stress disorder .
Initial learning about Photovoice among participants included an introduction to the foundations and method of Photovoice, a review of ethics and safety guidelines, brief instruction on photo-taking tips, and practice developing captions based on sample photos. Participants were instructed to ask permission before taking someone’s photo, and to provide written consent for themselves and for any individuals appearing in photos to include the photos in the project exhibit. Participants then used disposable cameras for weekly photo assignments intended to describe both negative and positive aspects of lived experience with anxiety. Examples of guiding questions for weekly photo-taking included: ‘What is it like to live with an anxiety disorder?’ and ‘How does anxiety affect your health … work, family and social life?’ Each week, participants turned in their disposable cameras in for developing and reviewed printed copies of their photos from the prior week.
Patient partners approached their photo-taking seriously. They seemed to feel a responsibility to share their lived experience and contribute to improving quality of care for anxiety disorder in the emergency department. As a patient-partner peer leader noted:
We are trying to get anxiety seen as something serious, which it is. Anxiety is not just feeling anxious. It is something that can be debilitating. It needs to be taken more seriously in the Emergency Department. This project is our chance to talk about anxiety, so people can see where we are coming from. (Patient Partner Peer Leader).
As they shared their photos with their patient partner peers, the group used reflection questions based on the SHOWeD method to structure one-to-one and group discussions about the photos as well as their meaning and significance . SHOWeD is an acronym for structured reflection questions : What do you See here? What is really Happening here? How does this relate to Our lives? Why does this situation, concern, or strength exist? What can we Do about it?
Patient partners used journals to record their thoughts and support group discussions and caption-writing. Participants chose which of their photos to discuss with the group and share outside the project setting. Facilitators transcribed the focus group discussions and developed draft captions, using wording from the transcripts, for each photo chosen for the project exhibit by participants. Through an iterative process that involved taking additional photos, writing, reviewing, and discussion, participants refined their photo selections and what they wanted to say about them. During time outside of regular meetings, participants used a secure online platform (e.g., Slack) to communicate with each other and facilitators about their photos and captions, create a title for their exhibit, and develop a common format for their exhibit posters.
A wrap-up event brought together research stakeholders (patient partners, clinicians, researchers, health system leaders) to share learning from the P2P project including challenges to current care delivery in the ED relative to low-risk chest pain and anxiety, epidemiology of the problem (i.e., prevalence of low-risk chest pain and anxiety), a gallery exhibit of the Photovoice posters, semi-structured small group conversations among clinicians, investigators, and patient-partners, and opportunities to inform decision-making about treatment options through PCOR. Bringing together stakeholders at the event was intended to foster conversations about patient experiences with anxiety disorders as illustrated in the gallery exhibit, gain stakeholder input and feedback on the proposed research idea and question, gain support for prioritization of the research topic, and plan next steps for informing a research project.
The final Photovoice exhibit included two posters from each participant and brief background information about anxiety, the project purpose and funder, and the Photovoice method. In addition, the content of the exhibit was also combined into a 5 × 8-in. booklet for event attendees to keep. The content of each poster, without formatting, is shown below in Figs. 2, 3, 4, 5, 6 and 7. For each figure we provide a title showing the first name and initial of the photographer (who also wrote the legends).
The project team chose “Leveling the Playing Field for Anxiety Disorders” as their exhibit title to reflect patient partners’ unique knowledge and expertise, which contributed to understanding (and empathy for) the impact of anxiety on their lives. “Leveling the Playing Field” means helping patients and providers to communicate across disciplinary boundaries, learn from each other, and collaborate to improve health and healthcare for anxiety disorders in the Emergency Department and beyond. An example of an individual poster is shown in Fig. 8.
The photos and captions patients chose to share in this paper reflect a wide range of perspectives on how patients think and feel about anxiety in their lives. Some pictures are concrete images that convey sources of anxiety or coping strategies whereas other pictures reflect abstract representations of what it’s like to live with an anxiety disorder from the patient’s perspective. Facilitators purposively avoided being overly-prescriptive so that patients with varying levels of awareness and ability to express their thoughts and feelings could comfortably contribute. Prior to participation, participants did not feel understood and generally thought their symptoms were minimized during care encounters in the ED. From their perspectives, the impact of anxiety on their lives was a knowledge gap that they were motivated to fill. Their photos and captions reveal the truth of their experience from their perspectives. Their photos and captions may not in fact reflect the “Truth” of anxiety disorder from a clinical perspective, as has been found with narrative-based illness research . In other words, the posters reflect the raw truth of patient-partner experiences, which was effective at engaging the clinicians, researchers, and administrators who attended the wrap-up event in discussion about health and healthcare experiences with anxiety. During the wrap-up event, the Photovoice exhibit “sparked conversations that might not have happened otherwise,” according to patient partners, who also noted that attendees “were asking questions and taking notes. I was taken aback by how into it they were. They were good conversations.” Stakeholder questions involved asking about experiences of care during an Emergency Department visits, stigma, and everyday things that people go through. Patient-partners commented, “They were curious about what it is like to have anxiety,” and “They genuinely wanted to know and understand.”
Photovoice achieved its intended effects of increasing awareness among all stakeholders about the burden of anxiety in patients’ lives and the imperative of improving emergency department care for anxiety. The Photovoice results complemented epidemiological data on the research topic resulting in elevated importance of the proposed research and were instrumental in engaging broad stakeholder participation in subsequent research planning. The discussions between healthcare executives and patients contributed to pledges of support for development and submission of a research award application that included costs to the health system associated with implementing interventions to be tested. In addition, all 20 event attendees plus other identified key individuals contributed to development of the research idea during ongoing meetings. Within a two-month period, the collaborative efforts of the expanded research partnership resulted in submission of a letter of intent and invitation to apply for a research award through PCORI. Shortly thereafter, a full research proposal focused on addressing anxiety among low-risk chest pain patients in the emergency department setting was submitted and is currently under review. Our project’s focus on encouraging collaboration for future research and action is similar to other, research-based photovoice projects .
Participation in the Photovoice project also had a positive effect on patients, at multiple levels. On the personal level, patient-partners were able to participate in greater reflection about the impact of anxiety disorder on their lives. At a group level, Photovoice provided an opportunity to give and receive emotional support during group discussions in which they became more comfortable talking about their anxiety with others. Although the patient-partner group had been meeting together over the past 6 months under the P2P project, Photovoice participation bonded them further and created a sense of group cohesion. As noted by patient partners during a discussion dedicated to reflection on their Photovoice participation, “It led us to think outside the box and helped us to communicate about that part of our lives,” “It allowed me to open up more,” and “It helped me to dig deep within myself to better express how living with anxiety affects me by using objects and images that are all around me.” Several participants added that Photovoice was therapeutic, “It made me step back and take a look at my anxiety in ways I hadn’t before,” and “Taking pictures and reflecting on them afterwards makes you a little bit more at peace.” As such, participation in Photovoice was perceived as adding value to involvement as a patient partner for research. Photovoice also gave them an opportunity to use their lived experience to provide new and valuable information and be recognized for their contribution. One patient partner commented, “It was really nice to have others express how much they liked my photos and to even be told how great a job I had done.” The positive contribution experience carried over to an observable increase in participation during discussions about various aspects of the research plan including enrollment strategies, preferences for treatment options to be compared, and measurement of outcomes relevant to their experience of symptoms and desired functional improvements. Furthermore, the group cohesion and pride in accomplishments that developed among patient partners contributed to retention of all six patient-partners during an (unfunded) transition period following the end of the P2P engagement award and during planning and submission of the research application that included ongoing patient partner roles during conduct of the research. Empowerment and engagement observations described above support findings in reviews of photovoice in the peer-review literature .
Similar to other photovoice projects, we involved health system leaders as well as providers, patients, and researchers but did not formally evaluate impact of the exhibit on attitudes or perceptions of these stakeholders . In addition, while seeking health equity through improved awareness of health and healthcare challenges among stakeholders (those in power) is a common goal of photovoice projects and studies , we did not directly measure any changes in awareness of anxiety as a serious condition. Future photovoice projects could include these issues in a formal evaluation to improve understanding of impact on all stakeholder groups.
In sum, the Photovoice project component encouraged meaningful communication across all stakeholders and, along with other P2P-funded engagement activities, contributed to their increased support for the research topic and ongoing involvement in the development and submission of a research award for patient-centered outcomes research.
Availability of data and materials
Generalized Anxiety Disorder 7-item scale
Pipeline to Proposal award
Patient-centered outcomes research
Patient-Centered Outcomes Research Institute
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We would like to acknowledge the efforts and contributions of each patient partner contributing to the Photovoice project. We would also like to acknowledge members of the core investigator team involved in the overall Pipeline-to-Proposal project including Paul Musey, MD, P2P Project Co-Lead; Jenifer Vohs, PhD, HSSP; Patrick Monahan, PhD; Yelena Chernyak, PhD, CBSM, HSSP; Emily Holmes, MD, MPH; and Kurt Kroenke, MD.
This Photovoice project was funded through a Patient-Centered Outcomes Research Institute (PCORI) Pipeline-to-Proposal Award (7710509-A), administered on behalf of PCORI by Trailhead Institute. The views presented in this Photovoice project are solely the responsibility of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee or other participants in PCORnet.
Ethics approval and consent to participate
Activities under the Pipeline to Proposal engagement award were reviewed by an Institutional Review Board and deemed non-human subjects research.
Consent for publication
Consent for publication was obtained from each patient to share their individual contributions (i.e., photos, captions, taglines) to the Photovoice project.
The authors declare that they have no competing interests.
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Nault Connors, J.D., Conley, M.J. & Lorenz, L.S. Use of Photovoice to engage stakeholders in planning for patient-centered outcomes research. Res Involv Engagem 5, 39 (2019). https://doi.org/10.1186/s40900-019-0166-y