Healthcare as we know it is changing fast. As hospital and clinic
systems redesign themselves to better facilitate collaboration among
providers representing a variety of disciplines, our patients and their
families are benefiting through increased access to coordinated and
reciprocally informed services. As our training sites across graduate
and medical education prepare future healers to enter these more complex
work environments, we are seeing yesterday’s interdisciplinary tensions
regarding whose field is better (e.g., Psychology vs. MFT) change to
contemporary mutual respect and valuing of our colleagues’ contributions
to a whole that is more than the sum of its parts. At the same time,
policy makers, system administrators and 3rd party payers are working to
advance ways to financially sustain new ideas and methods of
Many of our efforts, however, appear to be missing something that I
think is important to consider: attention to the role(s) of our patients
and their families. Whether it is in the research studies that I
peruse, clinics and hospitals that I work in or collaborate with,
mission statements that I read on care facilities’ walls, pamphlets or
brochures, presentations that I listen to, or professional conversations
and forums that I participate in – almost everything that is "out
there” frames professionals as the carriers of knowledge/wisdom and
providers of services vis-a-vis patients/families who are relatively
It is my (and several of my colleagues’) opinion that the greatest
untapped resource for improving health care is the knowledge, wisdom,
and energy of individuals, families, and communities who face
challenging health issues in their everyday lives (Doherty, Mendenhall
& Berge, 2010). Consider, for example, the following questions: How
does somebody recently diagnosed with diabetes really overhaul his/her
lifestyle (and stick with it) across diet, physical activity, and
disease management- arenas? Where is ‘the line’ between supportively
reminding someone to check blood sugars and being a ‘nag’? How can a
partner avoid burning out from supporting a mate whose pain is chronic
and progressive and whose complaints are never-ending? How does a
partner attend to his/her own health and needs as his/her partner
continues to decline? How do couples handle the sometimes intrusive
roles of health professionals, social services and/or insurance
Our system is set-up (and evolving) in a way that enables providers
to talk with each other more than ever before, but patients still sit
straight-forward in our waiting rooms reading outdated magazines in
comparative isolation. Social prescripts keep their interactions
superficial, and we are not allowed to encourage anything more. HIPAA
laws restrict us from connecting a patient who has learned how to
effectively manage a chronic illness with somebody who was just
diagnosed and is struggling with a great deal of fear and ambivalence.
Privacy mandates prohibit our introducing the spouse of a patient who
has been taking care of her brain injured husband for 10 years to the
spouse of another patient who just sustained a similar injury. Outside
of structured group visits (which still tend to be top-down and
expert-driven), opportunities for patients to share their wisdom are
Patients’ and families’ wisdom are similarly absent from many of our
conventional methods of designing, implementing and/or evaluating
interventions. We, as the professionals, decide what is important to
teach, how to teach it, and what is important to measure. At a recent
forum I was invited to participate in to discuss a clinic’s
transformation to a "patient-centered medical home,” I was
simultaneously taken-aback and not surprised by the fact that there were
no patients at the table.
As large national and international organizations focused on health
(e.g., Agency for Healthcare Research and Quality (AHRQ); National
Institutes for Health (NIH), World Health Organization (WHO)) have
systematically called for – and advanced funding to support – community
driven and collaborative efforts to address complex health and social
problems ill-suited for conventional top-down service delivery and
research endeavors, community-based participatory research (CBPR) has
been put forth as a way to partner with our patient communities – and
thereby create and implement supportive care systems that neither
providers/researchers or patients/families could create on their own.
Several key assumptions permeate CBPR projects, including: 1)
recognizing that the community is the principal unit of identity; 2)
partnership that is democratic and equitable between all project members
(e.g., patients, providers, researchers) through every stage of
knowledge- and intervention- development; 3) identifying and building on
the strengths and resources already within the community; 4) promoting
capacity-building and co-learning between and among project partners; 5)
deep investment in change toward improving the lives of members in a
community or practice; 6) an iterative process in which problems are
identified, solutions are developed within the context(s) of the
community’s existing resources, interventions are implemented, outcomes
are evaluated according to what participants see as most important, and
interventions are modified in accord with new information as necessary;
7) project members are both humble and flexible to accommodate changes
as necessary across any part of a project; 8) disseminating new
knowledge to and by all partners and constituents in the investigative
process; 9) recognizing that CBPR can be slow and messy (especially
during its early/initial phases); and 10) long-term engagement and
commitment to the work (Bradbury and Reason, 2003; Doherty, Mendenhall
and Berge, 2010; LaVeaux and Christopher, 2009; Mendenhall and Doherty,
2005; Scharff and Mathews, 2008; Strickland, 2006).
Care systems have slowly been experimenting with CBPR since the 1990s
because of its ability to inform understanding of patients'
experiences, generate or improve services, facilitate community outreach
and engagement, enhance education and learning, and improve cultural
awareness. These efforts have effected improvements in asthma, the
management of preoperative fasting, patient problem-solving skills,
dental and mouth care practices, overall physical well-being,
patient-practitioner communication, and patient and practitioner
satisfaction. My and my colleagues’ (Bill Doherty and Jerica Berge) work
in Minnesota in "Citizen Health Care” (a model designed purposefully
for medical and mental health professionals who work with families in
community settings) has seen marked improvements in diabetes, obesity
and smoking cessation (Berge, Mendenhall & Doherty, 2010; Doherty,
Mendenhall & Berge, 2010; Mendenhall & Doherty, 2007; Mendenhall
& Doherty, 2005; Mendenhall et al., in press; Mendenhall et al.,
As we advance our efforts in collaborative and integrated care, it is
important that we do not leave our patients and their families behind.
Indeed, the greater vision of work done in this way is to create a
model of healthcare, education, and outreach as work by and for its
citizens, with all stakeholders – including patients and their families,
physicians and other providers, researchers and administrators –
working as active contributors.
At an early meeting in a project I am involved with that is focused
on American Indian patients with diabetes, I shared how our group’s
efforts were (are) advancing change in how health is embraced in the
local community. One of the elders interrupted me and said, "This is for
all of our people – here in Minnesota and across the country, and even
the world.” As future efforts in this and related initiatives proceed,
this vision of transforming health will serve as a sustainer of energy
and commitment in the face of a formidable – but inspiring – mission.
Berge, J., Mendenhall, T., Doherty, W. (2009). Targeting health
disparities though community-based participatory research. Family
Relations, 58, 475-488.
Bradbury, H., Reason, P. (2003). Action research: An opportunity for
revitalizing research purpose and practices. Qualitative Social Work 2:
Doherty, W., Mendenhall, T., Berge, J. (2010). The Families &
Democracy and Citizen Health Care Project. Journal of Marital and Family
Therapy, 36, 489-402.
LaVeauz, D., Christopher, S. (2009). Contextualizing CBPR: Key
principles of CBPR meet the Indigenous research context. Journal of
Aboriginal and Indigenous Community Health 7: 1-25.
Mendenhall, T., Harper, P., Whipple, H., Haas, S. (in-press). The
SANTA Project (Students Against Nicotine and Tobacco Addiction): Using
community-based participatory research to improve health in a high-risk
young adult population. Action Research.
Mendenhall, T., Berge, J., Harper, P., GreenCrow, B., LittleWalker,
N., WhiteEagle, S., BrowOwl, S. (2010). The Family Education Diabetes
Series (FEDS): Community-based participatory research with a Midwestern
American Indian community. Nursing Inquiry, 17, 359-372.
Mendenhall, T., Doherty, W. (2007). The ANGELS (A Neighbor Giving
Encouragement, Love and Support): A collaborative project for teens with
diabetes. In The Therapist's Notebook for Family Healthcare, eds.
Deanna Linville and Katherine Hertlein, 56-70. New York: Apex Press.
Mendenhall, T., Doherty, W. (2005). Action research methods in family
therapy. In Research Methods in Family Therapy (2nd edition), eds. Fred
Piercy and Douglas Sprenkle, 100-117. NY: Guilford Publications.
Scharff, D., Mathews, K. (2008). Working with communities to
translate research into practice. Journal of Public Health Management
Practice 14: 94-98.
Strickland, C. (2006). Challenges in community-based participatory
research implementation: Experiences in cancer prevention with Pacific
Northwest American Indian tribes. Cancer Control 13: 230-236.