Involving the public through participatory visual research methods

Abstract

Objectives  To show how providing cameras to patients and community residents can be effective at involving the public in generating understanding of consumer, community, and health system problems and strengths.

Background  Health‐care institutions and systems may seek to include consumer perspectives on health and health care yet be challenged to involve the most vulnerable sectors, be they persons with disabilities or persons with low socio‐economic status living in societies where a top‐down approach to policy is the norm.

Methods  Drawing on study examples using photo‐elicitation and photovoice in Morocco and the United States, the authors explore issues of planning, data analysis, ethical concerns and action related to using participatory visual methods in different cultural and political contexts.

Results  Visual data generated by consumers can be surprising and can identify health system problems and strengths omitted from data gathered using other means. Statistical data may convince policy makers of the need to address a problem. Participant visual data may in turn encourage policy maker attention and action.

Conclusion  Health system decision making may be improved by having a broader range of data available. Participant‐generated visual data may support data gathered using traditional methods, or provide a reality check when compared with data generated by organizations, researchers and policy makers. The two study examples model innovative ways to surface health and health‐care issues as they relate to consumers’ real lives and engage vulnerable groups in systems change, even in contexts where expressing opinions might be seen as a risky thing to do.

Introduction

Although improving or maintaining the personal health status of patients and populations is usually their goal, health‐care institutions and systems may discount or ignore the perspectives of individuals and community residents on their health and health care. ¹ Yet there are few roadmaps for incorporating the perspectives of patients and populations into efforts to improve policy and practice despite recommendations ‘to establish dynamic structures and processes, legitimized by both participants and non‐participants’. ¹ Persons whose economic status, age, gender, race or health status places them in the most vulnerable or ‘have‐not’ sectors of society may be particularly challenging to engage in policy‐making efforts. ² We have carried out research projects using participatory visual methods in numerous countries with participants who are usually excluded from the policy‐making process. ³ , ⁴ , ⁵ , ⁶ We have found, in widely varying contexts, that participatory visual methods consistently engage individuals and communities in reflecting on and advocating for their perspectives on health, illness and health care. Although the methods are not a panacea for engaging users in efforts to improve health policy and practice, they create opportunities to bring patients’ and community residents’ real lives into the policy‐making process. ⁷ They foster increased understanding and awareness of health and health‐care challenges facing communities and persons living with chronic conditions. Although ‘direct impact on shaping healthcare activities and processes’ may be elusive, ¹ the methods can lead to actions that address participants’ concerns. They encourage active participation by patients and populations in collaborations with other stakeholders, including nonprofit organizations and government. Perhaps most important, they can lead to a reframing of the problems being investigated and encourage mutual learning on the part of researched and researcher alike. ¹ , ⁴ , ⁵

Participatory visual research is research that asks research participants (or subjects) to develop visuals – drawings, photographs, murals or videos – as part of the research process. We have used two types of participatory visual methods: photo‐elicitation and photovoice. Photo‐elicitation means inserting a photograph into the research interview to ‘understand the world as defined by the subject’. ⁸ With photo‐elicitation, the visual images can be photographs taken by the researcher, archival images or advertisements, for example. The visuals are then used in the research interview to bring out information that might remain ‘submerged in verbal interviews’ and bridge the gap for informants who ‘lack fluency with words’. ⁹ In our work, the research participants have generated all the images. Photovoice is a similar research process carried out as a group activity, in which participants (i) take photographs and discuss them in order to understand positive and negative aspects of a situation, community, problem or illness and (ii) carry out outreach activities for education or advocacy purposes, for example holding public exhibits, posting participant photographs and narratives on the Internet, and presenting at medical conferences. ¹⁰ , ¹¹ With both photo‐elicitation and photovoice as we have applied them, researchers and participants co‐create knowledge and build alliances ‘in the planning, implementation, and dissemination of the research process’. ¹²

Using visual methods in public health research

Visual methods are being used and accepted more and more widely in social science, organizational research and public health contexts. ¹³ , ¹⁴ Visual methods are often used in case study research, ¹⁵ ethnographies ¹⁶ and the investigation of the illness experience of patients. ¹⁷ , ¹⁸ Visual imagery accepted as data in the social sciences include drawings, photographs, video, charts and maps. ¹⁹ , ²⁰ , ²¹

Anthropologists have used photographs ‘to communicate those intangible aspects of culture’ ²² and to bring out information – especially emotions – that remained hidden during verbal interviews. ⁹ A paradigm shift took place when social scientists began to ask research subjects to produce the visual data – photographs, drawings or videos. An early example is a seminal study for which Navajos created films to show their understanding of the world and the place of their people and culture. ²³ Wang et al. asked women in rural China to photograph issues of importance to them, so their views could be incorporated into a major rural development project. ¹⁰ Lykes used participant‐generated drawings and photographs to address rural poverty and the effects of civil war on community life in rural Guatemala. ²⁴

Visual methods prompt ‘a more direct understanding of people, their life experiences, and their perceptions’ than is possible with data ‘collected and controlled solely by the researcher’. ¹⁷ Some would argue that the experiential knowledge of lay people is ‘invariably limited’, and should not be put on a par with the knowledge of medical experts. ²⁵ Others argue that keeping certain ‘issues and actors from getting to the table in the first place’ means that some ‘groups receive more attention’ and that ‘the legitimacy of others’ is discredited. ²⁶ We argue that professional understandings of illness and disease are inevitably limited and as such need to be placed in a context that includes lay people’s understandings of health systems and practices. Using participatory visual methods is one way to generate understanding of the wider context and develop a shared body of knowledge that, ideally, integrates the knowledge of social scientists and the daily life knowledge of research participants about their health and communities.

We have worked with people facing specific diseases and conditions [acquired brain injury (ABI), HIV/AIDS] and daily life problems (access to bathing facilities, ageing). We have worked with different groups (health‐care patients, elderly women, children and community residents) and for different purposes (health awareness and promotion, civic engagement and community development). Providing examples of participatory visual method studies in Morocco and the United States, we will show how providing cameras to patients and community residents can generate systematic understandings of consumer, community health, and health system problems and strengths.

Exemplars

In this section, we provide two exemplars of the use of participatory visual methods to explore public health issues and work towards change. One is an application of photo‐elicitation in a community context to understand local perspectives on problems faced by their community and develop future scenarios that take into account local residents’ perceptions and preferences. The other is an application of photovoice with a group, to understand the impact of a specific health condition on their lives, raise awareness among peers, health providers, families and policy makers, and encourage changes in policy and practice. For each exemplar, we briefly describe the study’s context, purpose, population, planning, analysis methods, use of the visual data and ethical issues. For each exemplar, we have provided three photographs and what the research participant wrote or said about each one.

Perspectives of residents on traditional baths and community in Morocco

The example presented here focuses on the Sefarin hammam in Fez, Morocco. The hammam is a traditional ‘Turkish’ bath, where local residents go for washing and religious purification ceremonies. In Fez, the hammam is located in the centre of the medina (market), a UNESCO cultural heritage site. The photo‐interview studies in Fez were part of a larger research study (HAMMAM – Hammam, Aspects and Multidisciplinary Methods of Analysis for the Mediterranean Region) in five countries: Morocco, Algeria, Egypt, Syria and Turkey. ⁱ

The hammam has for centuries served as a central place for social life in the countries that touch the Mediterranean, and continues to be a valued part of the cultural and architectural heritage of Fez, Morocco, where the photo‐elicitation study took place. The hammam remains an important supportive element in the health care and hygiene of the local population, as a source of potable (drinking) water and a public place where women can meet in the Islamic context. The hammam also serves as a place for people to relax, and for religious, artistic and ceremonial activities.

Urban renewal and other pressures to modernize traditional neighbourhoods is threatening the continued existence of the hammams, a major feature of Islamic cultural heritage. Funded by the European Union, the HAMMAM study aimed at developing interdisciplinary strategies to envision and plan for the future of hammam buildings and their neighbourhoods. Project objectives included developing future scenarios for the adaptive re‐use of the hammam as a public service centre for Mediterranean Islamic cities. The HAMMAM project research questions were: (i) What is the desired sustainable future for the hammam neighbourhood? and (ii) How can an operating hammam initiate such a sustainable future within a human settlement?

The HAMMAM project design had a strong participatory approach: in each case country, a local interdisciplinary team of scientists, architects and other experts were responsible for organizing and conducting the field work and the process of discussing and analysing the data generated. The social scientists on the team used a range of qualitative research methods, including observation, verbal interviews and participatory tools such as the photo interview, to investigate local perspectives (hammam users, non‐users and local residents) on the hammam. The qualitative research portion of the interdisciplinary project was intended to provide an opportunity for local residents to have a ‘voice’ in the research project and ensure that their viewpoint was incorporated into the future scenarios developed for the hammam architectural and restoration project.

Access and recruitment

The local partner organization was Ader‐Fez, ⁱⁱ a governmental organization that works closely with local residents to support restoration and renovation of the medina. A staff member of Ader‐Fez who was already well known to local residents due to her work mediating the medina restoration project accompanied the social science team and helped them to recruit five local residents to participate in the photo‐elicitation portion of the study. Her recruitment activities involved explaining the study method (photo‐elicitation) and the overall project purpose and objectives to several persons and potential interview partners. Morocco is a constitutional monarchy in which the king has executive authority over Parliament and the military, and it can be uncomfortable if not dangerous for citizens to appear to criticize the government. Having Ader‐Fez as a local partner or gatekeeper gave potential participants confidence in the research purpose of the project and the task they were being asked to do, and helped to minimize any sense of risk. The planned project discussion and dissemination efforts, including public meetings and presentations, also created a contract of trust between local residents and the foreign scientists.

Methods and procedures

The social scientists had hardly several days to carry out their fieldwork. They found that the photo‐elicitation method allowed them to quickly gain an integrated introduction to people’s lives and their perspective on the hammam and the future of their neighbourhood. Participants used a disposable camera to take 12–24 photographs each of positive and negative aspects of the hammam and their neighbourhood from their perspective. Their visual data were supplemented by interviews, field observations, and other disciplinary and interdisciplinary research carried out under the study. Participants include craftsmen making and selling handcrafts in the medina, a university student, a local woman who had dropped out of school at a young age and a 10‐year‐old boy, accompanied by his father. In the HAMMAM study overall, 562 photographs were taken by local residents in five countries. In each country, residents selected which photographs to review and discuss with the researcher. Interviews were transcribed word for word in their original language and translated, for analysis by the European social scientists. In Fez, participants took a total of 120 photographs, which showed people and buildings from the HAMMAM neighbourhood and from other urban neighbourhoods outside the medina.

Analysis of visual data

The Fez case study demonstrated, compared with the HAMMAM case studies in Egypt, Turkey, Algeria and Syria, that the hammam remains well integrated into contemporary life in Morocco. In Morocco, residents of the hammam neighbourhood use the hammam weekly and they see the medina (the historical centre of Fez) as having positive value. From the participants’ perspective, history connects the old town of Fez with the world, particularly because the medina in Fez is an official world cultural heritage site. Aspects of the neighbourhood depicted in participant photographs include the medina, the library, the hammam and the local mosque, and participants expressed appreciation when talking about these places, portrayed in their photographs (Fig. 1).

Figure 1.

 ‘I have chosen this photo because it is the photo of the library of the Qarawiyin mosque. It’s restored. I love all the monuments of the Medina, and the walls will be like this one. I found that there are living fingerprints of the Islamic art. This kind of fingerprints: the cedar wood, the chalk. This photo looks like the construction material for the medina of Fez. It is a living model’. – Participant, HAMMAM Case Study, Fez, Morocco, 2006.

The photograph and interview excerpt above are not surprising as the opinion expressed represents a socially accepted public opinion. However, using visual methods opened up an unexpected view of the city and provided subtle opportunities to share a different, less positive perspective and show aspects of daily life that might otherwise have remained hidden from the researcher. For example, participant photographs showed places where the researcher would not otherwise have had access: religious sites, where only Muslims have access, the inside of local homes, the view from private terraces, common living space behind compound walls and hidden public pathways. Their photographs also documented unanticipated problems. The level of hygiene at the hammam, originally conceptualized by the research team as an issue of concern, was not considered an issue at all by participants. Of greater concern to them was the level of hygiene in the neighbourhood overall. Problems shown in their research images included poor waste management and lack of cleanliness in medina streets and along the banks of the local river, and poor treatment of animals used to carry goods inside the medina (Fig. 2).

Figure 2.

 ‘All those who love their town don’t want to see it in this condition, by the way the photo is very significant’– Participant, HAMMAM Case Study, Fez, Morocco, 2006.

Participants used the photograph‐taking assignment to show areas of concern without necessarily discussing them in the interview. Their interviews were similarly subtle, suggesting solutions without ascribing blame for the problems or responsibility for implementing the solutions. For example, one participant said ‘It is necessary to do something for the Medina so that she becomes very clean and very beautiful’ (Participant, HAMMAM Case Study, Fez, Morocco, 2006), without naming the person or agency who should do the cleaning up. A participant similarly framed a critique of the polluted valley in the cultural heritage town of Fez in a careful way, and expressed possible solutions in a reserved manner, avoiding the appearance of criticism.

Use of the visual data

Participant photographs were used in the photograph interview and in the public presentation of the HAMMAM project, in which the preliminary results of the interdisciplinary field work were shared. During the presentation, researchers, residents and political representatives discussed problems, solutions and future scenarios for the hammam presented in the visual and other data. The partner organization in another country exercised veto power over inclusion of one image in a presentation, because the photograph depicted migrants who had settled in the hammam neighbourhood and the partner organization did not want to raise tensions among local residents. In Morocco no photographs were suppressed, but as discussed above, participants were careful about the photographs they took and what they said about them, while at the same time expressing a valuable perspective on their community and its future.

In the Moroccan context, a top‐down political process is the norm. The photograph‐elicitation activity, however, allowed a bottom‐up process to grow. The photograph‐elicitation data demonstrated appreciation for the cultural heritage of the hammam but also identified concerns over the amount of restoration needed, the challenges related to accessing the neighbourhood and the transportation problems that exist within the cultural heritage of the medina. For example, one participant noted, when describing the streets in the medina where her house is located, said, ‘My friends (who are living in the new town of Fez) ask me if I am living in a tomb, when they come to see me’. She noted that access to the house is so narrow that her friends feel uncomfortable walking to the house to visit. The narrow streets and limited transportation makes it difficult to transport ill family members to hospital, keeps handicapped people from moving around and limits local access to modern services. For example, local residents have to consider the width of the lane leading to their home when buying a refrigerator (Fig. 3).

Figure 3.

 ‘This is one access to the medina. If someone gets ill, you find problems to arrive up to R’cif square to take a transport, a car, a taxi or bus to get to the doctor or the hospital.’– Participant, HAMMAM Case Study, Fez, Morocco, 2006.

The new city of Fez was seen by hammam residents as comparing favourably to the hammam in terms of convenient transportation. Thus the photograph‐elicitation activity provided an opportunity for local residents to depict their feelings of conflict between appreciating the cultural heritage of their neighbourhood and their desire to live a ‘modern life’.

The future scenarios developed by the project overall incorporated the perspective of local residents as expressed in their photographs and interviews. Future scenarios, worded as if the actions had already taken place, include the following examples: (i) The accessibility into the Medina has improved thanks to a range of actions that have been undertaken by the administration, including the development of new ways to access the Medina, and (ii) An emergency vehicular network has been developed inside the Medina to provide priority access for emergency public services extending to the centre of the Medina. ⁱⁱⁱ Although the actions described above have not as yet taken place, they represent the type of future actions hoped for and being worked towards by the local partner organization.

In conclusion, working with visual methods helped to bridge power and knowledge gaps between the governmental organization and local residents. The project provided a new voice for underprivileged people and created a new connection of communication between local residents, medina craftsmen and the governmental organization. The local organization will continue working with participatory methods in an awareness‐raising process for the hammam, starting this year, with some of the previous HAMMAM partners.

Brain injury survivors in the United States reveal their injury and their lives

ABI is any injury to the brain that occurs after birth and results in impairments in cognitive, physical or emotional functioning. Causes of ABI include stroke, brain tumours, epilepsy, near drowning, traumatic brain injury and multiple sclerosis. In Crossing the Quality Chasm, the 2001 Institute of Medicine report on quality and health care, one area that the authors target for improvement is person‐centredness, which encompasses the patient’s experiences of illness and health care and the outcomes an individual may hope or aim for. ²⁷ Rehabilitation from ABI is complicated by unpredictability and uncertainty about a person’s potential for recovery of function. ²⁸ Thus, providing care that is patient‐centred may be particularly urgent for persons with ABI.

At the time of the study (2006), most published research into ABI was quantitative and focused on measuring the impact of injury on a person’s capacities: memory, ability to function, communication skills and ability to work. There were few studies seeking to understand brain injury survivors’ perspectives on the health care they receive and the impact of brain injury on their lives. There were few studies depicting the impact of the lack of access to rehabilitation services on the lives of long‐term survivors, or persons who had received their brain injury at least 1 year prior to participation and were no longer eligible for rehabilitation services paid for by private insurance.

The photovoice study described here was part of a larger study that also included photo‐elicitation research with brain injury survivors accessing outpatient rehabilitation therapies at a rehabilitation hospital. The eight participants were recruited from the members of a brain injury survivor support group in the U.S. state of Massachusetts, in the north‐eastern region of the United States. The Framingham support group has 20 members overall, and is one of 30 brain injury support groups receiving funding and other support from the Massachusetts State Head Injury Program (SHIP) and the Brain Injury Association of Massachusetts (BIA‐MA). Planning for the project involved close collaboration between the researcher and the support group’s founder and facilitator, who provided vital assistance in tailoring the method to persons with brain injury, in particular keeping the facilitation pace slow and steady, avoiding information overload for participants, and developing a system for regular reminders about homework assignments and meeting times.

Access and recruitment

The support group’s facilitator became interested in doing the study as an extracurricular support group activity after a member of the group participated in a pilot photovoice activity with the researcher. The facilitator acted as gatekeeper to the group, and worked together with the researcher to plan the study, secure funding and recruit participants from among the support group’s 20 members. The gatekeeper’s interest in the bringing the study to the group was the method’s potential to provide an opportunity to practice cognitive skills in a supportive environment.

Recruitment efforts involved a presentation by the researcher, in collaboration with a brain injury survivor who had participated in a photo‐elicitation pilot 6 months prior, and the group’s founder. The presentation included examples of photographs and narratives from previous photovoice projects and a discussion of ethical issues related to doing participatory visual research. The presenters explained the research purposes: to understand lived experience with brain injury (i) better understand lived experience with brain injury, (ii) provide opportunities for participants to reflect on their lives and employ a variety of cognitive skills and (iii) raise awareness about brain injury in the community. They also presented the photograph‐taking questions: (i) What is it like to live with brain injury? (ii) What in my life or community has helped me in my recovery from brain injury? (iii) What has slowed my recovery from brain injury? (iv) What do I want to tell other people about living with brain injury? (v) How is my life different now from how it was before? What is better? What is worse? (vi) What are my hopes for the future? What might help me get there?

The power of the participants in this research approach was immediately apparent, when they protested use of the word ‘recovery’ in the photograph‐taking questions. They insisted on substituting the word ‘healing’ instead. They did not like the word ‘recovery’ because it implied a desire to return to previous abilities and status, which, as long‐term survivors they realize is not possible. They preferred the word ‘healing’ because it describes continual if gradual progress over time, as they have continued to experience in their lives.

Eight support group members agreed to commit to participating in the 10 weekly project sessions, offered as an extracurricular support group activity. Two participants were injured 3 or 4 years before the start of the project, four were injured between 8 and 17 years prior to the study and two were injured more than 25 years prior. Six have survived traumatic brain injuries, and two have survived brain tumours. Participants ranged in age from 40 to 60 years old; five are women and three are men. Most participants volunteered for the study to promote their healing from brain injury, and grew enthused about the study’s awareness purpose over time.

Methods and procedures

The study used disposable cameras because they are low cost, are easily replaced if lost and place an emphasis on photograph content (not artistic value). Participants used two or three cameras each over several weeks, filed their photographs in binders and selected images to discuss with the group during project sessions. Using a total of 21 cameras, participants took 365 photographs in all. Fifty‐five photographs (taken by six participants) were visual metaphors for something the photographer wanted to say. Forty‐five were taken in participants’ homes; 41 depicted family and friends; 33 depicted challenges in life with brain injury; while 29 depicted strategies employed for dealing with life with brain injury (Fig. 4).

Figure 4.

 ‘To compensate for my poor memory and organizational skills, I need to put labels on everything in my home. Where are my socks? Which of these is my schedule book? On which shelf did I put my Bible? These labels are necessary three years after my accident and probably for many years to come. It is painful to remind myself about all of the brain power which I lost at the time of my car accident’. – Participant, Framingham Photovoice Study, 2006.

Participants selected photographs to discuss with the group. Each participant discussed at least one photograph per session. Most wrote their photograph narratives as homework assignments; some dictated their narratives to project leaders.

Methodological adaptations for brain‐injured participants included balancing the participatory nature of photovoice with brain injury survivors’ needs for structure and direction, and allowing participants to bring in existing photographs to discuss if they wished. In three instances, participants substituted personal snapshots for their project photographs. For example, one participant preferred to show her garden in the summer, when plants were more lush, because the garden looked better than in her study photograph taken in late fall. Another participant preferred to use in the study exhibit a formal portrait of herself and her two dogs, rather than the informal snapshot taken with her study camera.

Participants regularly took the lead during study sessions. They probed each other about their photographs and experiences, often leaving the co‐facilitators to be participant‐observers. The photograph discussions encouraged mutual learning among facilitators and participants alike (Fig. 5).

Figure 5.

 ‘It’s a beautiful day, but we ARE in a graveyard. My life now has great moments of beauty and peace, BUT I am not where I thought I would be. I feel both grateful and cheated by this turn of events’. – Participant, Framingham Photovoice Study, 2006.

Analysis of visual data

Data analysis was an iterative process that began with the participants as they reflected on and took photographs of their lives. A major analytic activity involved working collaboratively to group participant photographs and captions into nine themes: The Journey, Lost Dreams, Chaos, Challenges, Strategies, My Advocacy Story, Comfort and Support, Acceptance, and Hope for the Future. The exhibit themes describe a group narrative that takes a storied form ²⁹ and shows ‘the journey’ of long‐term healing from brain injury. Study data resist U.S. health insurance funder policies, which assume that healing from brain injury will plateau 6 months post‐injury and often limit funding for rehabilitation services to a 6‐ to 12‐month post‐injury window.

Use of visual data

Participants have exhibited their photographs at three libraries in Massachusetts, at two brain injury conferences, at a neurology conference and at the Massachusetts State House. The study strengthened the relationship between the support group and BIA‐MA, which has placed the exhibit on permanent display in its board room. The study led to a photovoice facilitator training for support group leaders in Massachusetts, and several groups have carried out their own photovoice projects. In June 2008, the study exhibit was posted on the website http://www.brainline.org, funded by the Defense and Veterans Brain Injury Center, for the purpose of creating awareness of survivor experience of brain injury and promoting social networking among brain injury survivors. Participants have taken a leadership role in identifying outreach opportunities, including developing an evening programme at a Massachusetts public library raising awareness about the problem of brain injury among U.S. military personnel returning from Iraq and Afghanistan. The study has not resulted in observable action to date, for example changes in brain injury policy or practices. Interestingly, it has appeared to inspire action to heal and hope among the participants, as seen in the photograph and caption that follow (Fig. 6).

Figure 6.

 ‘New depth of acceptance. In my 17th year of recovery, I am no longer shamed by lack of hair and scar. It represents a new freedom, pride in what I have overcome’. – Participant, Framingham Photovoice Study, 2006.

Discussion

The field of public health has vigorously adopted visual methods, often to engage local people whose voices might be otherwise ignored or to adjust development efforts to reflect local realities. ³⁰ A strength of these methods is the uncovering of positive aspects of health, illness, health care and community – for example, brain injury survivor strategies for dealing with the challenge of memory loss due to brain injury, or appreciation for cultural heritage even given the daily living challenges it can impose. Caution is needed, however, in considering the positive messages conveyed; how much are the data influenced by the research context, for example, does the support group environment encourage an appearance of courage in the face of challenges? How much does the Moroccan political climate influence the messages shared?

As participants create visual data and talk about them, they transform the experiential knowledge of their daily lives into data on illness conditions or other ‘equally complex and multifaceted’ health topics – data that would have remained hidden in surveys or service use statistics. ²⁰ Health system decision making may be improved by having a broader range of data available. In the Morocco study, participants showed places that researchers would not have been able to access, given their gender, nationality and limited time in country. The U.S. study elicited much richer data than would have been possible using a survey or a traditional qualitative interview with cognitively impaired persons. Again, this strength accompanies a challenge – how can policy makers apply rich, context‐laden data to quality improvement or reform efforts? We have no hard and fast guidelines in hand. As the use of these methods continues to grow, examples of policy change using visual data will likely grow also.

A third strength is the opportunities that photographs create to feel and share emotions. Emotions and cognition work together to influence perception, learning and behavior. ³¹ Statistical data may convince policy makers of the benefits of addressing a particular problem. Participant‐generated visual data may in turn encourage policy maker attention and action. Future efforts to involve the public would benefit from incorporating research methods that explore and evoke emotions alongside methods that measure problems using statistical data. ²⁰ , ³²

Conclusions

Giving cameras to participants or asking them to draw pictures shifts the power differential between researcher and participant and provides a mechanism for participants to teach researchers and policy makers. ⁴ , ¹⁷ , ²³ Participants value the opportunity to air their views, whether or not action results, and for some public involvement efforts, providing the public – particularly members of vulnerable groups such as elders, children or persons living with long‐term conditions – such an opportunity may be a worthwhile goal in and of itself. Ideally, however, a participatory visual research project is an initial step in an effort to address the problems or support the strengths that participants identify. Perhaps future public involvement research using visuals will find that they can empower not just individuals but the health‐care system, organizations and communities as well. ¹

Efforts to involve the public may have different purposes, one being the opportunity to reframe problems by posing new research questions or focusing attention on aspects of daily lives. ¹ Participatory visual methods help researchers and practitioners to avoid ‘indirect mechanisms and passive forms of representation which reinforce existing power hierarchies and social inequality’. ¹ The resulting data may support data gathered through more traditional means – or may lead to new future visions, unanticipated strategies, and policies that improve the lives and health of individuals and their communities.

In the Moroccan context, involving local citizens in reflecting on health and other conditions in their communities is a nascent effort, encouraged by European partners. The HAMMAM project is serving as a model for engaging common citizens in a process of policy and community development and has informed a follow‐on project that intends to raise awareness for the HAMMAM as a cultural heritage for the Mediterranean area and beyond, and encourage the use of public health standards in traditional public baths. ^iv

The ABI study has been adopted by the local Brain Injury Association affiliate, which has posted the exhibit in its boardroom, taken the lead in outreach with state policy makers and rehabilitation hospitals and generated new understanding about living with brain injury, even among persons who have long served survivors. New openness to bringing the perspective of persons with disabilities into policy‐making processes continues to grow. For example, the Center for Health Policy Research of the University of Massachusetts Medical School has begun to implement a state‐wide photovoice project with five groups of consumers of long‐term care services as part of a Systems Transformation Grant funded by the Centers for Medicare and Medicaid (CMS). As part of a larger effort to obtain the state, consumers and providers’ perspectives on quality of long‐term services and supports and reach consensus on appropriate quality measures, the Transformation Grant photovoice projects may effect improvements in long‐term care policies and practices. The projects we carried out in Massachusetts and Morocco did not involve the stakeholders needed to effect systemic change. However, our studies model possibilities for revealing issues and quality concerns as they relate to real lives and for safely engaging vulnerable groups, even in contexts where expressing opinions might be seen as a risky thing to do.