Tag Archives: health disparities

Gender, Race, and the Complexities of Science and Technology: A bibliography

In a 2011 graduate course on “Gender, Race, and the Complexities of Science and Technology,” students were asked to add an annotated reference or resource (=person, organization…) to the evolving googledocs bibliography each week.  (Annotations were to convey the article’s key points as well as its connection to the student’s own inquiries and interests.)  The result is as follows: Continue reading

Developing theory about community-based participatory research IV

(completing a series of posts presenting an exploratory research proposal about community-based participatory research [CBPR] on health disparities [HD] from March 2010)

3.  What is a suitable HD to address by a research team that emerges through engagement^5 workshops?

A project would not be genuine community-based participatory research if the P.I. dictated the research question at the outset [12].  I will, however, bring into the project a concern about a specific source of current and future health disparities, namely, trauma-induced stress among young veterans of recent armed conflicts (an issue opened up for me by a colleague and a student who now works on mutual support among vets around PTSD). The long-term health-related objectives would be not only to reduce the effects of such trauma but also to establish a process of development through young-adulthood of resilience and of capacity to contribute positively—if only modestly at first—to community initiatives that respond to ongoing, stress-inducing social changes.

4.  How can we show if engagement^5 works?

In this project “works” means that the members of communities and concerned health researchers become more skilled and effective in contributing to the desired outcomes of collaboration with diverse participants.   “Works” also includes the more specific process goal of building a research team, with a wider constituency supporting it, that has identified a specific source of health disparities that engages the skills and interest of the team members and is ready to tackle it.  The approach to showing that engagement^5 works taken in this project is to develop what I term “embedded process evaluation,” in which one person contributes to the evaluation and improvement of the ongoing facilitated processes of the workshops while they are underway.  The embedded process evaluator is not a facilitator or leader of the process, but someone who observes, reviews products, naggingly asks “so what?” about any outcomes along the way (including any formative evaluation the facilitator might conduct), and eventually prepares a document that shows external evaluators (or funders) how well the process achieved its stated goals [13].  This role could be part of good facilitation, but the embedded process evaluator is someone who: a) is not as busy during the workshop as the main facilitator(s) will be; b) can provide feedback to the main facilitator(s), but has no say in whether/how that is used; c) might not be present at all meetings; d) in their own eyes and in the eyes of external parties, is not captured by the goals of the specific group that they are embedded in.

References

[12] Greenwood, D. & M. Levin (1998), Action Research: Social Research For Social Change. Thousand Oaks, Sage

[13] Such a role was taken by sociologist Denise Lach in an institutional cultural change initiative at Oregon State University, pers. comm.and McMurray, J. K. and D. Lach (2002). Practicing change (Final report to W.K. Kellogg Foundation and Oregon State University for InterACTION! : Food Systems Professions Education Initiative). Corvallis, OR, Oregon State University. This role has affinities to monitoring and real-time evaluation in humanitarian relief work, e.g., Herson, M. and J. Mitchell (2005). “Real-Time Evaluation: where does its value lie?” Humanitarian Exchange Magazine 32(December), but also with many other approaches to evaluation and facilitation.

Developing theory about community-based participatory research III

(continuing a series of posts presenting an exploratory research proposal about community-based participatory research [CBPR] on health disparities [HD] from March 2010)

Engagement^5 refers to five kinds of engagement:

a.  With oneself.  (“Respect, risk, and revelation combine so that participants’ ‘gears’ engage allowing them to sustain quite a high level of energy during the workshop…  The participants… are reminded of their aspirations to work in supportive communities.” [8])

b.  With others. (“The small number and mixed composition of the workshop participants means that participants have repeated exchanges with those who differ from them in meaningful and generative ways.” [8])

c.  Flexible engagement (“An ideal in which researchers in any knowledge-making situation are able to connect quickly with others who are almost ready—either formally or otherwise—to foster participatory processes and, through the experience such processes provide their participants, contribute to enhancing the capacity of others to do likewise.” [3, p. 225])

d. Constituency-building (This comes about “when you draw people into reflection, dialogue, and other participatory processes that elicit ideas about the current situation, clarify objectives, and generate ideas and plans to take action to improve it; when people work together to implement actions; and when people see evaluations of how good the actions/changes were in achieving the objectives.” [9])

e. Team-building (Arriving at a group who share a common concern [in this case, about a specific source of current and future health disparities] and are prepared to address “the challenge of bringing into interaction not only a wider range of researchers, but a wider range of social agents, and… the challenge of keeping them working through differences and tensions until plans and practices are developed in which all the participants are invested.” [3, p. 199])

The initial topics for the proposed workshops will primarily engage academic researchers before reaching out from that base:

a. Speaking to skeptics of community-based participatory research in health

(an analysis of evidence about CBPR and synthesis of best practices)

b. Learning to participate

(an analysis of evidence about training for both conventional participation [10] and cyber collaboration [11] and synthesis of best practices)

c.  Health disparities or population health?

(addressing theory, evidence, and controversies about social determinants of health and corresponding health policy [1])

d.  How can CBPR be connected to HD?

(addressing theory, evidence, and controversies [4])

e.  Sources of current and future health disparities in Boston and the contributions UMB researchers could make to address them

(identifying a specific source that engages the skills and interest of UMB researchers)

f.  Pilot workshop on CBPR for the HD source identified in Workshop e

(with goal of formulating a CBPR proposal for funding)

(To be continued)

References

[1] Rose, G. (1985). “Sick individuals and sick populations.” International Journal of Epidemiology 14: 32-38.  Lynch, J. (2007), “Relevant Risk, Revolution and Revisiting Rose: Causes of Population Levels and Social Inequalities in Health,” http://www.sph.umn.edu/research/hdwg/engagement/risk.asp (viewed 30 Sept. 2009)

[3] Taylor, P.J. (2005), Unruly Complexity: Ecology, Interpretation, Engagement. U. Chicago Press.

[8] Taylor, P. J., S. J. Fifield, et al. (2009). “Cultivating Collaborators: Concepts and Questions Emerging Interactively From An Evolving, Interdisciplinary Workshop.”  Ms. http://www.faculty.umb.edu/pjt/08c.pdf (viewed 16 March 2010).

[9] Taylor, P.J. (2009) Action Research Cycles and Epicycles, http://www.faculty.umb.edu/pjt/ARcyclingIII.pdf (viewed 16 March 2010).

[10] Schuman, S., Ed. (2006). Creating a Culture of Collaboration: The International Association of Facilitators Handbook. San Francisco, Jossey-Bass.

[11] Swan, M. (2009). “Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking.” International Journal of Environmental Research and Public Health Reports 6: 492-525.

Developing theory about community-based participatory research II

(continuing a series of posts presenting an exploratory research proposal from March 2010)

2.  How do researchers move towards the participatory end of the continuum of CBPR?

Chung and Lounsbury [5] present a continuum of CBPR from compliant participation through directed consultation and mutual consultation to empowering co-investigation.  They also describe their experience of what I term structural frustration, which results from sponsors using their power to change the terms of the research, selectively discount the outcomes of CBPR, or stifle the continuing participation of community members. (Equivalent structural frustrations have long been evident in CBPR in Natural Resources Management; see [2].)  Yet even if structural sources of frustration did not exist, the place where research lies on the CBPR continuum is not simply a matter of choice or commitment [6] of the reseachers.  There are also process frustrations.  It is not a given that members of communities and concerned health researchers are skilled and effective in contributing to the desired outcomes of collaboration with diverse participants.  The approach taken in this project rests on the premise that investment of time and attention to “cultivating collaboration” [7] is needed if CBPR is to avoid process frustrations and, as a consequence, be less vulnerable to structural frustrations.

The approach to cultivating collaboration be explored in this proposal is through what I call here “engagement^5” workshops [7].  This approach builds on the model and evaluations of a series of innovative, interaction-intensive, interdisciplinary workshops that I have organized (dating back to 1998) that foster collaboration among those who teach, study, and engage with the public about scientific developments and social change ([8] givesmore details about these workshops).  The centerpiece of this capacity-building, proposal-development, and research project is a series of multi-day workshops, which, together with other shorter forms of training in methods of collaboration and participation, will lead over two years to the formation of a research team and a wider constituency supporting that team.  Each workshop is also designed to be valuable in its own right to participants (see engagement a-c in next post), even if they do not go on to become part of the constituency or team working on the CBPR (see engagement d & e).

(To be continued)

References

[2] For a review of the politics of participation and participation rhetoric, see Peters, P. (1996), “”Who’s local here?”  The politics of participation in development,” Cultural Survival Quarterly 20(3): 22-60.

[5] Chung, K. and D. W. Lounsbury (2006). “The role of power, process, and relationships in participatory research for statewide HIV/AIDS programming.” Social Science & Medicine 63: 2129–2140.

[6] Global Alliance on Community Engaged Research (2009). Higher Education, Community Engagement and the World We Want (A Policy Brief to the World Conference on Higher Education).

[7] New England Workshop on Science and Social Change (2010). Links to webpages and associated materials for all workshops. http://www.stv.umb.edu/newssc.html (viewed 16 March 2010).

[8] Taylor, P. J., S. J. Fifield, et al. (2009). “Cultivating Collaborators: Concepts and Questions Emerging Interactively From An Evolving, Interdisciplinary Workshop.”  Ms. http://www.faculty.umb.edu/pjt/08c.pdf (viewed 16 March 2010).

Developing theory about community-based participatory research I

This series of posts presents an exploratory research proposal that begins from two observations:

1) Improvement in the health of disadvantaged or under-served minorities does not necessarily require community-based participatory research; population health measures may be equally or more suitable [1];

2) Participation in community-based participatory research does not come naturally to members of those communities or to concerned health researchers [2].

Four Questions

1.  In what way(s) do we link community-based participatory research (CBPR) to Health Disparities (HD)?

This question needs to be addressed because, as noted above, improvement in the health of disadvantaged or under-served minorities does not necessarily require community-based participatory research.  Population health measures, such as pollution regulations that reduce the airborne particulate burden in urban areas, may be equally or more suitable [1].  The arguments offered for making a CBPR-HD linkage include: helping to identify health problems; cooperation in data collection and retention in longituidinal follow-up; acknowledgement of needs of disadvantaged; and others (see [4] for a longer list and discussion).  The linkage that these posts promote is that CBPR can address HD by engaging community members in improving their own health and in the social determinants of their health.  (To be continued)

References

[1] Rose, G. (1985). “Sick individuals and sick populations.” International Journal of Epidemiology 14: 32-38.  Lynch, J. (2007), “Relevant Risk, Revolution and Revisiting Rose: Causes of Population Levels and Social Inequalities in Health,” http://www.sph.umn.edu/research/hdwg/engagement/risk.asp (viewed 30 Sept. 2009)

[2] For a review of the politics of participation and participation rhetoric, see Peters, P. (1996), “”Who’s local here?”  The politics of participation in development,” Cultural Survival Quarterly 20(3): 22-60.

[4] Minkler, M. (2005). “Community-Based Research Partnerships:  Challenges and Opportunities.” Journal of Urban Health: Bulletin of the New York Academy of Medicine 82(2, supplement 2): ii3-ii12; Viswanathan, M., A. Ammerman, et al. (2004). Community-Based Participatory Research: Assessing the Evidence. Summary, Evidence Report/Technology Assessment: Number 99. Rockville, MD, Agency for Healthcare Research and Quality (Publication Number 04-E022-1).