publisher colophon
Abstract

This symposium includes twelve personal narratives from individuals and teams who have been engaged in community–academic partnerships in research and public health. This issue also includes four commentaries on these narratives by experts in patient and research subject advocacy, healthcare and biomedical ethics, social science, and health education funding. While much has been written about community–academic partnerships, what appears in the literature does not include in–depth, personal reflection on the challenges and obstacles faced in these partnerships. With this symposium, we aim to stimulate reflection and discussion about creative approaches to community–academic partnerships in order to guide those who are both new to and experienced in community–engaged work.

Keywords

Bioethics, Academic Engagement, Bidirectional Partnership, Partnered Research, Stakeholder Engagement, Community Partners, Patient Engagement, Community Engagement, Health Disparities

Background

Academics have been partnering with communities for decades (Israel, Schulz, Parker, & Becker, 1998). Community engagement is touted not only as the “more ethical” thing to do, but often the “more practical” thing to do in health–related research and service delivery (Wallerstein & Duran, 2008). This practicality recognizes the breadth of the knowledge base that informs research and values collaboration among academic professions in association with community partners. The idea that conducting research or delivering programs with community partners—as opposed to on them or to them—would increase participation and relevance certainly makes logical sense. Yet, community engagement is still not widely practiced, embraced, or rewarded in academia (Calleson, Jordan, & Seifer, 2005), nor are its ideals easily met by those who attempt, with all the best intentions, to do it right.

Why not? The short, perhaps too glib answer is that community engagement is hard work that is anything but straightforward. It is also somewhat mysterious and intimidating to those who have not attempted it. Meeting the ideals of true partnership [End Page 1] cannot be achieved by simply following a series of pre–determined steps. There is no clear recipe to follow. Community engagement is an approach—a mindset, rather than a method per se. Different groups have proposed guiding principles for community engagement (for example, see Clinical and Translational Science Awards Community Engagement Key Function Committee Task Force on the Principles of Community Engagement, 2011). While these principles are useful in communicating the general ethos of community engagement, like other codes of ethics and professionalism, they do not provide specific guidance for how to act in specific, complex situations. Certainly experience helps, but every community and every project are different and the localness of projects within each community differentiates the level of engagement.

Published reports of the results of scientific experiments usually present an overly polished version of what actually happened; false starts, wrong turns, and flat out failures are absent, and the final product presents a streamlined, hassle–free version of the truth (Grinnell, 2009). The same might be said about published reports of the results of community–engaged research (although the journal Progress in Community Health Partnerships, which is devoted entirely to community engagement, does have special sections featuring lessons learned and community perspectives). Community and academic partners often do not have luxury of space in which to reflect on challenges and obstacles so that others might learn from them. Learning the lessons of other partnerships, even those that suffer from breakdown, can potentially promote (or renew) the sense that collaborative relationships offer opportunities for parties that neither could achieve in isolation from each other.

Anecdotally, we know that almost everyone who has engaged in community–academic partnerships—on both sides of the equation—has stories of the “you just can’t make this stuff up” variety. Often, the biggest challenges were not and likely could not have been anticipated. Challenges still would have arisen despite parties’ familiarity with best practices, dedication to cultural humility, and adherence to proper process. We also know that community-academic partnerships in public health can profoundly change people. For researchers, more than their career trajectory can be affected. For communities, the impact extends beyond health improvement.

In this special symposium, we asked academic researchers, service providers, and leaders of community organizations who have actively engaged in community–academic partnerships to share their personal stories. We wanted to hear about how they have been personally affected by these partnerships—with the study aims, methods, and findings taking a backseat to their own experience and reflection on challenges, obstacles, and lessons learned. What we aimed to achieve was a collection of thought–provoking dilemmas and words of wisdom that perhaps demystifies the processes associated with engagement for others planning or in the middle of community–academic partnerships.

The Call for Stories

In the call for stories, we sought submissions from individuals with first–hand experience engaging in community–academic partnerships to conduct research or deliver health care or public health services. The call was open to academic researchers, service providers, and leaders of community organizations. We were interested in the exploration of partnership challenges, strengths, and lessons learned from a personal perspective. We wanted authors to share the types of experiences that often get left out of academic publications.

Authors were asked to consider the following questions:

  • • What kind of research or service project did you conduct?

  • • What roles were played by community partners? What roles were played by academic partners?

  • • How did each of the partners contribute to shaping the project’s goals, approach, and outcomes?

  • • What was positive about the partnership experience?

  • • What obstacles or challenges did you face in the partnership?

  • • What do you wish you had known before establishing the partnership? [End Page 2]

The call for stories was included in the NIB newsletter and on the NIB website. Additionally, the call was posted on social media platforms and sent directly to colleagues known to be active in community engagement and networked with others doing similar work. The call was also distributed on several listservs managed by Community Campus Partnerships for Health (CCPH) (https://ccph.memberclicks.net/). We were very pleased by the response to the call for stories, and received 35 proposals despite having a lead time of only six weeks.

The Narratives

The 12 stories that we included in this issue reveal a variety of experiences. The large number of proposals allowed us to include narratives representing a very diverse group of community–academic partnerships as well as a diverse group of authors. We heard from a broad range of academics from the health and social sciences and service providers working with communities across the country: promotores in East Los Angeles; an Amish community; Congolese refugees in Indianapolis; a transgender health program in Portland, Oregon; a community health center in Minneapolis; a practice–based research network focusing on Hispanic health in Charlotte, North Carolina; Afghan immigrants in Northern California; African–American women in Milwaukee; a diverse group of community research advisors in Madison, Wisconsin; people living with HIV; media outlets in rural American Indian and Alaska Native communities; elders in rural South Carolina.

While it is not surprising that the majority of partnerships at the center of the narratives involve research, a few stories also come from community– academic partnerships centered on the delivery of health services or educational programs for future health care providers. While some academics submitted their own personal narratives, others wrote collective stories, discussing events from multiple perspectives. Several authors wrote about their experiences as graduate students. Topics covered include the health care experience, including care at the end–of–life; dual roles, conflicts of interest, and challenges to privacy and confidentiality; cultural differences and cultural competence; shared ownership of projects; the importance of trust, flexibility, humility, and openness; experiences of discrimination and stigma; and social determinants of health. The stories, locations and those impacted vary and yet the collective experiences, challenges and struggles to move a research partnership towards sustainability followed similar threads.

Because of the large number and diversity of submissions, six additional stories are also included in the online supplement for this issue.

The Commentaries

This symposium includes four expert commentaries on the narratives, which draw out themes and lessons learned. These commentary authors are experts in patient and research subject advocacy, healthcare and biomedical ethics, social science, and health education funding. Ms. Gianna McMillan is a patient and research subject advocate who specializes in consent issues in clinical trials; the rights of children and their families in research; and the collection of oral histories of research and bioethics. Dr. BJ Crigger is the director of Ethics Policy for the AMA. Dr. Crigger is an expert in bioethics and advocates for the use of narratives to teach students about major bioethical issues. Rebecca Dresser is an expert in biomedical ethics. Since 1982 she has taught law and medical students about legal and ethical issues such as end–of–life care, biomedical research, genetics, and assisted reproduction. She has written extensively about research subjects and patient advocates and the important roles they can play in promoting ethical research. Dr. Nina Tumosa is a leader in geriatrics education and research. Her many years of service in the Federal Government includes fifteen years with the Veteran’s Administration and at present, as a Public Health Analyst for the Health Resources and Services Administration, U.S. Department of Health and Human Services. [End Page 3]

Conclusion

Our primary goal with this symposium was to provide a platform for individuals engaged in community–academic partnerships to reflect on some of the more nuanced challenges of such work, as well as the ways in which they themselves had been personally affected by the partnership. The human stories of partnerships inevitably develop as teams meet, set specific aims and deadlines, complete project milestones, and write reports. Yet the human side of community–academic partnerships gets no more than a few lines in an academic publication—while human lives are profoundly affected. The fact that we received so many story proposals suggests that individuals engaged in community–academic partnerships have so much more to share than what is published in the traditional academic literature.

A list of references for publications that report findings from studies conducted by the community–academic partnerships detailed in the symposia in this issue are listed on the NIB website at http://www.nibjournal.org/current/index.html.

Emily E. Anderson
Loyola University Chicago, Stritch School of Medicine
Kevin J. Valadares
University of Southern Indiana, College of Nursing and Health Professions
Correspondence concerning this article should be addressed to Emily Anderson, PhD, MPH Associate Professor in the Neiswanger Institute for Bioethics at Loyola University Chicago, Stritch School of Medicine, Health Sciences Campus, 2160 S. First Avenue, Bldg. 120, Room 280, Maywood, IL 60153. Email: emanderson@luc.edu

Conflicts of Interest. The authors report no conflicts of interest.

References

Calleson, D.C., Jordan, C., & Seifer, S.D. (2005). Community–engaged scholarship: Is faculty work in communities a true academic enterprise? Academic Medicine, 80(4), 317–321.
Clinical and Translational Science Awards Community Engagement Key Function Committee Task Force on the Principles of Community Engagement. (2011). Principles of community engagement (2nd edition). Atlanta: Centers for Disease Control and Prevention, Agency for Toxic Substances and Disease Registry. Retrieved from https://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Report_508_FINAL.pdf
Grinnell, F. (2009). Everyday practice of science. New York: Oxford University Press.
Israel, B.A., Schulz, A.J., Parker, E.A., & Becker, A.B. (1998). Review of community–based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173–202.
Wallerstein, N., & Duran B. (2008). The theoretical, historical, and practical roots of CBPR. In M. Winkler & N. Wallerstein (Eds.), Community–based participatory research for health (pp. 25–46). San Francisco, CA: Jossey–Bass.

Additional Information

ISSN
2157-1740
Print ISSN
2157-1732
Pages
1-4
Launched on MUSE
2017-07-12
Open Access
No
Back To Top

This website uses cookies to ensure you get the best experience on our website. Without cookies your experience may not be seamless.