About CES4Health

Product Details

Product at a Glance - Product ID#3M35GY5G


Title: Is the Health Care System Good for People?


Abstract: We present two short documentary videos that we created together through the process of participatory research on the health care system in the United States. We, as a research team consisting of one academic researcher, her assistant, and six participant researchers, exchanged our experiences with the system and divided ourselves into two groups in order to develop specific research questions for each video. We interviewed each other and our neighbors, and then edited the interview materials down to approximately five minutes for each video.
In the first video (Rx for Health Care), we show interviews conducted among ourselves and with a doctor, a nurse, and a rehabilitation coordinator about the issue of health care and pointed to problems and some possible solutions from our perspectives. In the second video (Healthcare: I Thought I Was Covered. What Happened?), we bring together the voices of people who had problems with health insurance coverage and show their struggles in managing health care cost with limited income.
The intended use of the video is to share our experiences and perspectives on health care with a wide audience in order to ignite bottom-up communication. Intended audiences are health care workers and researchers, community-based participatory researchers who are interested in using participatory video, and community action groups who grapple with health care issues and want to organize a video screening and discussion.


Type of Product: Website


Year Created: 2011


Date Published: 8/12/2012

Author Information

Corresponding Author
Kyung-Hwa Yang
McGill University
3700 McTavish Street
Suite 244
Montreal, QC
Canada
p: 438 868 9321
kayland@gmail.com

Authors (listed in order of authorship):
Kyung-Hwa Yang
McGill University

Nia Gabrile
Odyssey Project

Aracele Melgoza
Odyssey Project

Marco Garcia
Odyssey Project

Ivonne Canellada
Odyssey Project

Suzette Johnson
Odyssey Project

Brianne Kelly
Odyssey Project

Christina Padilla
Odyssey Project

Product Description and Application Narrative Submitted by Corresponding Author

What general topics does your product address?

Public Health


What specific topics does your product address?

Access to health care, Community engagement, Health disparities, Health equity, Social determinants of health, Low Income Health, Community-based participatory research


Does your product focus on a specific population(s)?

Uninsured, Urban, The economically disadvantaged


What methodological approaches were used in the development of your product, or are discussed in your product?

Arts-informed methodologies, Community-academic partnership, Community-based participatory research , Videovoice


What resource type(s) best describe(s) your product?

Documentary


Application Narrative

1. Please provide a 1600 character abstract describing your product, its intended use and the audiences for which it would be appropriate.*

We present two short documentary videos that we created together through the process of participatory research on the health care system in the United States. We, as a research team consisting of one academic researcher, her assistant, and six participant researchers, exchanged our experiences with the system and divided ourselves into two groups in order to develop specific research questions for each video. We interviewed each other and our neighbors, and then edited the interview materials down to approximately five minutes for each video.
In the first video (Rx for Health Care), we show interviews conducted among ourselves and with a doctor, a nurse, and a rehabilitation coordinator about the issue of health care and pointed to problems and some possible solutions from our perspectives. In the second video (Healthcare: I Thought I Was Covered. What Happened?), we bring together the voices of people who had problems with health insurance coverage and show their struggles in managing health care cost with limited income.
The intended use of the video is to share our experiences and perspectives on health care with a wide audience in order to ignite bottom-up communication. Intended audiences are health care workers and researchers, community-based participatory researchers who are interested in using participatory video, and community action groups who grapple with health care issues and want to organize a video screening and discussion.


2. What are the goals of the product?

The goals of the product are two-fold: One is to shed light on the voice of low-income adults on the health care system in the United States. The other is to instigate bottom-up, grassroots-based communication on the issue of health care. These goals are very timely under the current climate of health care reform in the United States. Although President Obama signed the Affordable Care Act into law in 2010, it seems still far from achieving health care for all Americans, and disputes surrounding enactment of the law have never ceased. More critically, debate on health care has been treated mainly as a political issue divided by Republicans and Democrats, leaving behind the voice of the people who most need a better health care system. There have been few, if any, endeavors to include their voices in constituting the law or its enactment. Furthermore, as discussed in more detail in Question 5, the discourse of public health is preoccupied with the lifestyle paradigm that stresses individual wellness and healthy lifestyle as a top priority. While it is important, we think that it may contribute to concealing the fact that health care is indeed a social justice issue and a social responsibility. By voicing our concerns about health care through the videos, we aim to stir conversations on health care with a wide audience from the ground up and ultimately to make grassroots perspectives salient in the ongoing debate on health care reform in order to achieve health care parity among all Americans.


3. Who are the intended audiences or expected users of the product?

Intended audiences are (a) health care workers and researchers who want to know more about people’s experiences with the health care system; (b) community-based participatory researchers who are interested in using participatory video for their work; (c) community action groups who grapple with health care issues and want to organize a video screening and discussion.


4. Please provide any special instructions for successful use of the product, if necessary. If your product has been previously published, please provide the appropriate citation below.

The product reveals the experience of economically disadvantaged persons with the health care system. It may be used most successfully in a group environment where people watch the videos together followed by facilitated group discussion. It would be helpful for the facilitator to allow the viewers to reflect on their own experiences; and to further provide the viewers with relevant information, such as the core issues of the Affordable Care Act and some studies of health care in the United States. A User Guide is made available on the website along with the product.


5. Please describe how your product or the project that resulted in the product builds on a relevant field, discipline or prior work. You may cite the literature and provide a bibliography in the next question if appropriate.

The project builds on the theoretical framework of participatory research, defined as “systematic inquiry, with the collaboration of those affected by the issue being studied, for the purposes of education and of taking action or effecting change” (1, p.409). Within this framework, we used a participatory video method informed by the work of White (2), who argued that participatory video can educate and empower the disenfranchised and bring about social change by allowing them to tell their stories. We define participatory video as a process in which project participants create a video about themselves or their concerns as a way of inquiring into problems in their lives and seeking solutions to their problems. Feminist scholarship, in particular, has emphasized the potential of participatory video for bringing out suppressed people’s voices (3;4;5).
Within these theoretical and methodological frameworks, we look at some of the issues of health care in the United States. According to the U.S. Bureau of Census (6), national health care expenses in 2005 amounted to approximately $2 trillion, 16% of the gross domestic product; per capita health spending was $6697, the highest in the world and more than twice the spending of most OECD (Organization for Economic Co-operation and Development) countries. Despite all, 15.8% (47 million) of the population was uninsured for a year in 2006. According to the World Health Organization press release, the United States spends more money than any other country on health care, and yet, it ranked 37th in the world in equitable health care in 2000 (7). More problematically, the predominant discourse in health care research in the nation has been focused on individual wellness and life style change instead of structural problems in health care. Criticizing this, Wallerstein and Freudenberg (8) called for social justice, arguing, “Lack of power at the individual, community and societal levels is a major risk factor for poor health” (p. 453). To date, the lifestyle paradigm still seems to prevail in the public health discourse, discarding social determinants of health, such as poverty and social inequity (9).
(For clarity, the term participatory video can be interchangeably used with the term videovoice. But we opt for the term participatory video to highlight the ethos of participation.)


6. Please provide a bibliography for work cited above or in other parts of this application. Provide full references, in the order sited in the text (i.e. according to number order). .

1. Mercer SL, Green LW, Cargo M, Potter MA, Daniel M, Scott Olds R, Reed-Gross E. Appendix C: Reliability-tested guidelines for assessing PR projects. In: Minkler M, Wallerstein N, editors. Community-based participatory research for health: From practice to outcomes. 2nd ed. San Francisco: Jossey-Bass; 2008, p. 408-418.

2. White SA. Introduction: Video power. In: White SA, editor. Participatory video: Images that transform and empower. London: Sage; 2003, p. 17-30.

3. Mitchell C, de Lange N, Milne EJ. Introduction. In: Milne EJ, Mitchell C, de Lange N, editors. The handbook of participatory video. Lanham, MD: AltaMira; 2012, p.1-15.

4. Moletsane R, Mitchell C, de Lange N, Stuart J, Buthelezi T, Taylor M. What can a woman do with a camera? Turning the female gaze on poverty and HIV and AIDS in rural South Africa. International Journal of Qualitative Studies in Education 2009;22:315-331.

5. Nair KS, White SA. Trapped: Women take control of video storytelling. In: White SA, editor, Participatory video: Images that transform and empower. London, UK: Sage; 2003, p. 195-214.

6. American College of Physicians. Achieving a High-Performance Health Care System with Universal Access: What the United States Can Learn from Other Countries. Annals of Internal Medicine 2008;148:55-75.

7. Stange KC. Refocusing knowledge generation, application, and education: Raising our gaze to promote health across boundaries. American Journal of Preventive Medicine 2011;41(4S3):S164–S169.

8. Wallerstein N, Freudenberg N. Linking health promotion and social justice: A rationale and two case stories. Health Education Research 1998;13:451-457.

9. Raphael D. Shaping public policy and population health in the United States: Why is the public health community missing in action? International Journal of Health Services 2008;38:63-94.

10. Fiske J. British cultural studies and television. In: Allen R, editor. Channels of discourse reassembled: Television in contemporary criticism. 2nd ed. Chapel Hill, NC: University of North Carolina Press; 1992, p. 284-326. (Original work published in 1987 in Allen R, editor. Channels of discourse)

11. Mitchell C, Weber S. Reinventing ourselves as teachers: Beyond nostalgia. London, UK: Falmer; 1999.

12. Wood L, Olivier T. Video production as a tool for raising educator awareness about collaborative teacher–parent partnerships. Educational Research 2011;53:399-414.

13. Lesage J. The political aesthetics of the feminist documentary film. Quarterly Review of Film Studies 1978;3:507-523.

14. Linell P. Approaching dialogue: Talk, interaction and contexts in dialogical perspectives. Amsterdam, The Netherlands: John Benjamins; 1998.

15. Mills CW. The sociological imagination. New York, NY: Oxford University Press; 1959.

16. Silverman D. Doing qualitative research: A practical handbook. 3rd ed. London, UK: Sage; 2010.

17. Pink S. Applied visual anthropology: Social intervention and visual methods. In: Pink S, editor. Visual interpretations: Applied visual anthropology. New York: Berg; 2007, p. 3-28.

18. Corneil MK. Citizenship and participatory video. In: Milne EJ, Mitchell C, de Lange N, editors. The handbook of participatory video. Lanham, MD: AltaMira: 2012, p. 19-34.

19. Chávez V, Israel B, Allen III AJ, DeCarlo MF, Lichtenstein R, Schulz A, Bayer IS, McGranaghan R. A bridge between communities: Video-making using principles of community-based participatory research. Health Promot Pract 2004;5:395-403.

20. Miller L, Smith M. Dissemination and ownership of knowledge. In: Milne EJ, Mitchell C, de Lange N, editors. The handbook of participatory video. Lanham, MD: AltaMira: 2012, p. 331-348.

21. Denzin NK. The cinematic society and the reflexive interview. In: Gubrium J, Holstein J, editors. Postmodernism interviewing. Thousand Oak: Sage: 2003, p. 141-155.


7. Please describe the project or body of work from which the submitted product developed. Describe the ways that community and academic/institutional expertise contributed to the project. Pay particular attention to demonstrating the quality or rigor of the work:

  • For research-related work, describe (if relevant) study aims, design, sample, measurement instruments, and analysis and interpretation. Discuss how you verified the accuracy of your data.
  • For education-related work, describe (if relevant) any needs assessment conducted, learning objectives, educational strategies incorporated, and evaluation of learning.
  • For other types of work, discuss how the project was developed and reasons for the methodological choices made.

Background: The project built on the ongoing collaboration between the academic researcher and the Odyssey Project (the researcher has offered to the graduates of the Odyssey Project a video production course free of charge since 2008). The Odyssey Project, administrated through the Illinois Humanities Council, is a Chicago-based Clemente Course that provides low-income adults with free college-credited courses in the humanities. The video course aimed to allow students to voice their concerns on critical issues in order to bring about progressive social change. The project was one of the courses, to which research components were added.

Study Aim: The project aimed to change the dominant discourses of health care reform and public health by voicing grassroots’ concerns about health care in order to instigate bottom-up communication on health care within the framework of social justice.

Design: It was designed as participatory video research carried out in multiple sessions. It combined research and education to assist the participant researchers in conducting research while simultaneously learning video production and research skills.

Sample: Six participant researchers were recruited from graduates of the Odyssey Project. The reason for this sampling was to bring out the voice of low-income adults while solidifying the pre-existing community-academy relationship with the Odyssey Project. In the process of recruitment, the potential participant researchers were asked to write a short essay (350-500 words) about problems of the health care system from their perspectives. Anyone who submitted an essay was invited to participate in the project.

Data Sources: Data was obtained mainly from three sources. The first source is the product, the two documentary videos that we created together. The second source is the participant researchers’ reflections on the project. We had a group evaluation to discuss research findings as well as the participant researchers’ experiences with the project. The individual participant researchers also wrote a one-page long post-project reflection essay. The third source is the academic researcher’s participant observation.

Analysis: The project was analyzed with Fiske’s (10) textual approach to television study, as exemplified in previous participatory video projects (e.g., 4;11;12). The documentary videos were analyzed in relation to what the participant researchers had to say about the product. Two themes emerged through the analysis: (a) Health care policy is too complicated, and health care cost is not affordable. In this regard, Marco said, “it is too complicated, too many rules and too many insurances. All of these have nothing to do with illness or treatment.” Suzette commented, “It is a complicated system. We have to be accountable, it is hard to know”; (b) participatory video is fun and useful in engaging in conversations with and reaching out to people. Ivonne said, “many people who we interviewed were genuinely concerned about the issue of health and we ourselves learned a lot about the issue as we filmed along, which was a true gift.”

Interpretation: The value of the project may not be so much in the participant researchers’ stories about health care as in the format of the product. They recontextualized (13;14) grassroots experiences and shared them with an audience to stimulate discussion. This may be the biggest contribution to the study of health care. The project also suggests that participatory video is effective in bringing out people’s voice and in linking personal troubles to social structure (15).

Credibility: The participant researchers’ views on health care were triangulated through various methods (16), for instance, the group evaluation, individual reflection essays, and the conversation with an audience at the screening event (see Question 8).


8. Please describe the process of developing the product, including the ways that community and academic/institutional expertise were integrated in the development of this product.

The participatory research team consisted of Kay (academic researcher), Nia (research assistant), and six participant researchers. The project also involved people who participated in the project indirectly. They included the director of the Odyssey Project and its student support specialist, who helped recruit the participant researchers and organize the screening event at the end of the project, respectively. The staff of the Illinois Humanities Council provided a facility and services, including access to a copier, a printer, a projector, and the Internet.
Here we describe the process in which we, as a research team, conducted participatory research to create our documentary videos. We had weekly three-hour group sessions for five weeks. Additional time was spent developing video production skills, interviewing, and editing. Three video cameras and two Mac computers with iMovie software were allocated for the project. We used the cameras to generate data through interviews. We interviewed each other and people outside the research team, including a doctor, a nurse, and our neighbors. The process of editing doubled as an analysis of the interview data, as we reviewed the interview data together, selected significant statements from each interview, and juxtaposed them. Kay and Nia provided their expertise in participatory video while the participant researchers brought together multiple perspectives on health care. In doing so, we, as a team, investigated the problem of health care from the ground up and created knowledge together through the process of video production. In what follows, we highlight some of the important steps taken in each session.

Session 1: We set up group rules to govern our collaborative work ethics autonomously. One was to come to group meetings on time, and the other was for everyone to have an equal opportunity to speak. Then, we watched video clips on health care that Kay had prepared in order to teach/learn basic terms for video production and to discuss issues about health care. After learning camera operation, the participant researchers were asked to practice video production by recording an event, describing a person, or expressing an idea within three minutes using a storyboard without editing by the next session.
Session 2: We reviewed and critiqued the videos created by each participant researcher. The video topics included the waste of energy, a church event, and an outdoor event for the disabled. After a plenary discussion on health care policy, the participant researchers divided themselves into two groups—Aracele, Marco, and Christina in Group A, and Ivonne, Suzette, and Brianne in Group B—to develop more specific research questions in each group. Kay worked closely with Group A while Nia worked with Group B in order to help the participant researchers develop ideas. Then, the participant researchers were asked to interview each other in pairs about their experiences with the health care system by the following session.
Session 3: Nia presented a summary of the Affordable Care Act and a brief overview of the health care system in the United States. We then viewed each interview and critiqued each other, as we did before. We went on to discuss group projects, identifying interviewees and developing interview questions. While Group A focused on the problems of the health care system, Group B paid attention to health insurance coverage. We began to interview people outside our team after this session.
Session 4: We viewed two interviews Aracele and Kay conducted together at a clinic. Then, Kay demonstrated the process of video editing, and each group began to edit their video. Meanwhile, some changes occurred in both groups. Christina withdrew from the project because of a new job. Ivonne decided to move from Group B to A because of difficulty in getting in touch with group members. We continued to interview people.
Session 5: We had a group evaluation for approximately half an hour to discuss research findings and our experiences with the project. After the group evaluation, each group continued to edit their videos. The process of editing was intense and required more time than expected.
Presentation: Through this process, we came to create two participatory videos, titled Rx for Health Care and Healthcare: I Thought I Was Covered. What Happened. They are the product of the project and its visual report. Immediately after Session 5, we organized a community-based screening event at Malcolm X College. Approximately 30 people, including the participant researchers’ significant others, Odyssey Project faculty and staff and faculty members of Malcolm X College, attended the event. The video screening was followed by discussion between the audience and us.


9. Please discuss the significance and impact of your product. In your response, discuss ways your product has added to existing knowledge and benefited the community; ways others may have utilized your product; and any relevant evaluation data about impact, if available. If the impact of the product is not yet known, discuss its potential significance.

The significance of the product is that it is rooted in low-income communities and brings to the fore ordinary people’s experiences with and perspectives on the health care system in the United States. Such experiences and perspectives highlighted in the product may not be new. However, the videos in which the participant researchers recontextualized people’s experiences can be distributed widely to provoke discussion and action. Hence, although the immediate impact of the videos on the health care system may be marginal, it can be used to instigate dialogue among people, as we did through the screening event, and to lay the groundwork for changing the health care system. Therefore, we think that the impact of the videos, though not known yet, is potentially high.
A more direct impact is found in the learning experience that the process of participatory video making brought to the individual participant researchers. Aracele commented:

“Some of the most memorable experiences that I got out of this program were getting to know different aspects of the health reform issues in the U.S. and getting to use the camcorder. By interviewing a few doctors and nurses, I got to learn different points of view regarding the health reform. I learned quite a bit of information that I did not understand before.”

As she noted, the process of learning was very different from conventional, textbook-driven adult education programs. Learning occurred incidentally in the process of conducting participatory video research, which involved communicating with other participant researchers and community members. It seems that this process enabled the participant researchers to gain a deeper understanding of the health care system. The participant researchers’ comments suggest that individual awareness can mushroom into a wider community awareness and ultimately bring about a significant impact on society.


10. Please describe why you chose the presentation format you did.

We chose participatory video for the following three reasons. First, it is an effective medium for interventionist research (17), as indicated in the Fogo Island Project, which began in the late 1960s in a small fishing village in Canada. The residents experiencing economic hardship participated in a collaborative film project and eventually created a cooperative to control their fishery business for their economic benefits (18). That project shows how participatory filmmaking can promote communication and contribute to building capacity among community members. No such dramatic change occurred in our project. However, as discussed in Question 9, the process of video production helped us become more aware of the problems of the health care system and share the problems with people in our community. This may ultimately lead to change in the system.
Second, as Chávez et al. (19) argued, participatory video can enhance community-based research by “bringing credibility to the content of what is said, enabling community members to speak out and have their message heard” (p. 397). It can also provide community members with an opportunity to engage in knowledge construction and to develop a sense of shared ownership over research (20).
Lastly, the proximity of video to our lives, as suggested in Denzin’s (21) concept of a cinematic society (characterizing contemporary western society saturated with images and cinematic apparatuses), makes participatory video an even more appealing method for community-based research in contemporary contexts.


11. Please reflect on the strengths and limitations of your product. In what ways did community and academic/institutional collaborators provide feedback and how was such feedback used? Include relevant evaluation data about strengths and limitations if available.

We discuss the strengths of the product from the perspectives of the participant researchers, the interviewees, and the audience, respectively. First, from the participant researchers’ perspective, the video format of the product facilitated the process of participatory research. It helped the participant researchers carry out research effectively and hence develop a sense of ownership over the project. During the post-screening discussion at the presentation, a person from the audience asked the participant researchers what the strength of video was in comparison with other media such as writing. Marco addressed the question, saying that video allowed him to easily view the information they gathered and clearly present what each person said. Video seems to be a very accessible tool for participatory research. Second, from the interviewees’ perspective, the videos enabled people to speak for themselves and have their stories heard (19). Lastly, from the audience’s perspective, the videos seemed to offer a sense of immediacy and truthfulness. This is less likely to happen in a conventional, word-based research presentation, in which the voice of the people is often buried in a researcher’s analysis and interpretation. The videos allowed the audience to be in contact with the interviewees, including the participant researchers who presented themselves in the videos. This mechanism contributed to stimulating spontaneous discussion between the audience and the participant researchers at the screening event.
Along with these strengths, some limitations of the product have been noted. The limited time allocated for the project and limited video production and research skills among the participant researchers diminished what we as a research team could do to bring out the voice of the people on health care. In theory, participatory video has great potential for enabling participant researchers to communicate with one another and to bring out the voices of ordinary people. In practice, however, it was challenging to maximize the potential because of those limitations. The participant researchers had to learn both video production and research skills at the same time while learning the research topic, health care. Doing all this within a short period of time was overwhelming at times. Consequently, the stories we tell in the videos may not be comprehensive enough. Hence, some additional information may be necessary to use our product for community-based events or group discussion. For this reason, we provide a brief user guide along with the videos. Related to this issue, the videos have some technical problems, especially in audio. We used consumer-type cameras without an external microphone for easy use of the equipment. Hence, some parts of the audio are not clearly audible.


12. Please describe ways that the project resulting in the product involved collaboration that embodied principles of mutual respect, shared work and shared credit. If different, describe ways that the product itself involved collaboration that embodied principles of mutual respect, shared work and shared credit. Have all collaborators on the product been notified of and approved submission of the product to CES4Health.info? If not, why not? Please indicate whether the project resulting in the product was approved by an Institutional Review Board (IRB) and/or community-based review mechanism, if applicable, and provide the name(s) of the IRB/mechanism.

The ideas of mutual respect, shared work, and shared credit were indeed the guiding principles of the project. As mentioned in Question 8, we set up group rules to govern our collaborative work ethics autonomously before beginning the project. The academic researcher and her assistant made themselves available to help the participant researchers record and edit their videos. Some of the participants pointed to the ethos of collaboration as what they liked most. For instance:

“What I liked most about it was teamwork, even though my work schedule didn’t let me fully participate in all the interviews and meetings with my fellow students. However little time I got together with them, I enjoyed the teamwork very much and learned from them.” (Marco)

“What I like most about this program is the way we interacted with each other and the way we helped each other when we had to be somewhere. Not only that part but also the way we had the connection with you [the academic researcher] in that you were available, you know, to go with us in case our partners couldn’t go with us.” (Aracele)

The individual participant researchers were credited in the videos they produced. The academic researcher made a DVD video containing the product and distributed copies to the participant researchers and their interviewees. Because the product must abide by the research ethics that each participant researcher and interviewee signed, no single person, including the academic researcher, may use the product beyond what the individuals agreed to. Furthermore, in order to assist the participant researchers financially in conducting the research, bus fares and a small stipend (up to $35) were offered to each participant researcher. This was made possible through a grant awarded by the Puffin Foundation for the use of arts for progressive social change.
While the overall process of the project was cooperative and mutually respectful, the project was not free from conflicts among us as a research team. As indicated in Question 8, there seemed to be communication problems in Group B. Although all the participant researchers exerted effort to create a video, collaboration and group seemed less important than video production to some at times. How to avoid such situations and resolve conflicts among team members in a participatory environment may be one of the challenges that academic researchers need to address in order to facilitate more fruitful participatory research.
All the participant researchers and interviewees have approved making the documentary videos available online and submitting them for on- and off-line publications for knowledge sharing. The Research Ethics Board at McGill University approved the ethics of the project (REB File #: 426-0411) on May 2011.