Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders
Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders
0 Ottawa Hospital Research Institute , Ottawa, ON , Canada
1 Six Until Me , East Greenwich, RI , USA
2 School of Nursing, University of Ottawa , Ottawa, ON , Canada
3 , Anchorage, AK , USA
4 Knowledge and Evaluation Research Unit, Mayo Clinic , Rochester, MN , USA
5 Arthritis Alliance of Canada , Québec , Canada
6 Informed Medical Decisions Foundation, Healthwise, Inc. , Boston, MA , USA
7 Family Practice Health Centre and Institute for Health Systems Solutions and Virtual Care, Women's College Hospital , Toronto, ON , Canada
8 Department of Family and Community Medicine, University of Toronto , Toronto, ON , Canada
9 Laval University Research Institute for Primary Care and Health Services (CERSSPL-UL) , Quebec City, QC , Canada
10 Department of Health Services Research, The University of Texas MD Anderson Cancer Center , Houston, TX , USA
11 Office of Education and Continuing Development, Faculty of Medicine, Laval University , Quebec City, QC , Canada
12 Department of Family and Emergency Medicine, Laval University , Quebec City, QC , Canada
13 Department of Community and Family Medicine, Geisel School of Medicine at Dartmouth, The Dartmouth Institute for Health Policy and Clinical Practice , Lebanon, NH , USA
14 Quebec Centre for Excellence in Aging, St-Sacrement Hospital , Quebec City, QC , Canada
15 Department of Population Health Sciences, University of Utah , Salt Lake City, UT , USA
16 Occupational Science and Occupational Therapy , Toronto, ON , Canada
17 Research Centre of the CHU de Québec , Quebec City, QC , Canada
18 East End Community Health Centre , Toronto, ON , Canada
19 Patients Canada , Toronto, ON , Canada
patient engagement; patient-centered outcomes research; stakeholder engagement
Research increasingly means that patients, caregivers,
health professionals, other stakeholders, and
academic investigators work in partnership. This requires
effective collaboration rooted in mutual respect,
involvement of all participants, and good communication.
Having conducted such partnered research over
multiple projects, and having recently completed a project
together funded by the Patient-Centered Outcomes
Research Institute, we collaboratively developed a list
of 12 lessons we have learned about how to ensure
effective research partnerships. To foster a culture of
mutual respect, hold early in-person meetings, with
introductions focused on motivation, offer appropriate
orientation for everyone, and maintain awareness of
individual and project goals. To actively involve all
team members, it is important to ensure sufficient
funding for everyone’s participation, to ask for and
recognize diverse contributions, and to seek the input
of quiet members. To facilitate good communication,
teams should carefully consider labels, avoid jargon
and acronyms, judiciously use homogeneous and
heterogeneous subgroups, and keep progress visible. In
offering pragmatic, actionable lessons we have learned
through our separate and shared experiences, we
hope to help foster more patient-centered research
via productive and enjoyable research collaborations.
Health research teams increasingly include patients,
caregivers, clinicians, and other stakeholders whose primary
careers are not health research. This may occur because team
leaders are convinced of the merits of such an approach,
because funders or publishers require it, or both.1–4 Such
partnerships are intended to increase the relevance of research
to those who might benefit from it and thus to reduce research
waste.5 This is an excellent and laudable aim; however, there
is relatively little practical guidance available about how to
effectively conduct such partnered research.
Previous reviews and evaluations demonstrate four points
about conducting partnered research. First, research teams
with patients, caregivers, and other stakeholder team members
tend to involve these stakeholders more at earlier stages in the
project than at later stages.6,7 Second, people coming into
projects without a research background may require
orientation in order to participate fully.8 Third, benefits of partnership
may be difficult to formally assess.9 Fourth, time requirements
are a frequent concern for everyone.7,10 These reviews offer
valuable evidence syntheses relevant to partnership, as do
recommendations from long-standing traditions of methods
such as community-based participatory research11 and
participatory action research.12 However, as partnered research
expands across research types and funding opportunities, more
people are engaging in team structures that are new to them.
Available frameworks suggest structures for partnerships,13–16
and literature promotes broad principles such as addressing
issues of power and equity17–25 and developing relationships
of trust.20–22,24–31 However, it can be difficult for teams,
particularly those new to this type of work, to operationalize
abstract structures and principles in the specific context of
their research project.
In this article, we draw from our collective years of
experience as patients, caregivers, clinicians, other stakeholders and
academic researchers in partnered projects to offer 12 practical
lessons we have learned about how to better conduct partnered
research. These lessons are intended for all people working in
such projects, including patients, caregivers, clinicians,
researchers, policymakers, and others.
DEVELOPING THE LESSONS
Our team recently completed a research project funded by the
Patient-Centered Outcomes Research Institute in which we
brought our perspectives as patients, caregivers, health care
professionals, other stakeholders, and academic researchers at
diverse career stages. Many of us also have other previous or
ongoing similar collaborations in other research teams.
We developed this list of lessons learned through iterative
consensus-building, offering ideas at regular teleconferences
during a 2-year project. After developing a preliminary list of lessons
for our own internal use, we realized that our lessons may also be
useful to others. We therefore conducted two rounds of a
modified Delphi process32 within the study team to reach consensus
on the importance of each lesson for different types of research
projects and to organize the lessons into themes.
Our lessons learned are classed within three broad themes,
each with four lessons.
Theme 1: Establishing and maintaining a culture and
expectation of mutual respect
Patients, other stakeholders, and academic researchers bring
different contributions, perspectives, experiences, and ways of
working, all of which are needed to succeed in reaching a
common goal. It helps to acknowledge the views and
contributions of all participants, to bridge differences or tensions
when they arise, and to assume best intentions from everyone.
Have an in-person full team meeting as early as
possible. This is especially critical if much of the
forthcoming work will happen by email, teleconference,
or videoconference. Giving team members the chance to
first get to know each other as people helps everyone
build a foundation of common understanding, trust, and
human relationships that will carry forward into the rest
of the work.
2. Introduce yourselves with stories, not titles.
Introductions focused primarily on positions and titles can imply
hierarchies, contributing to problematic power dynamics.
Instead, team members can introduce themselves by
discussing how and why they got involved with the
project, what they hope to bring to the project, and what
motivates them in their role. This format serves two
purposes. First, it may help teams establish common
ground as people, thus reducing perceived or real power
imbalances. Second, framing introductions around
motivations may help everyone relate through shared goals.
3. State individual and project goals explicitly. To ensure
clarity about project goals and how individual goals fit
with the project, it can be helpful to ask all team
members to state explicitly what they hope to bring to
the project, what they hope to get out of it, and what they
hope the project contributes to health care. Teams should
then assess the alignment between individual and project
goals and periodically review the extent to which each
project is meeting these goals.
Offer orientation to everyone. Orientation can be useful
to team members who are new to research and also to those
who are new to working in diverse stakeholder teams or in a
new clinical setting. This orientation should lay a
foundation for mutual respect, understanding of perspectives, and
familiarity with terminology. It is important to avoid
homogenization of the diverse perspectives that people
would otherwise bring to a project. Orientation should not
be positioned as something intended to correct knowledge
deficits among team members who are not academic
researchers. All team members may have things to learn.
It is also important to consider terminology. When one of
our academic team members initially raised the potential of
Btraining,^ some stakeholders noted the implicit power
imbalance inherent in the term and suggested that
Borientation^ would be a better label.
Theme 2: Actively involving all team members
Starting off well with a diversity of perspectives is an
important first step. However, to truly capitalize on the
potential benefits of such diverse perspectives and make the whole
greater than the sum of its parts, we must actively involve all
team members. Careful consideration when assembling a team
can help ensure a productive diversity of background,
perspectives and thoughts.
Ensure funding for everyone’s participation. No one
should have to pay to be at the table. Volunteer work is
not free; it uses time that could be spent on other things.
Furthermore, requiring team members who are not
professional researchers to serve as volunteers means that
the only people whose voices are heard are those who
can afford to volunteer their time. Team members who
are not already receiving a salary for their work on the
project should be offered compensation, though they
may choose not to accept it. Team members who are
primary caregivers should be offered additional funding
to cover caregiving expenses incurred in their absence.
6. Recognize different kinds of contributions and efforts.
Each person on the team brings important
contributions. Our collective experience leads us to believe
that it is important to recognize all types of work
involved in these contributions. Simply being
involved and sharing intimate personal details about
one’s health or the health of a loved one, or bringing
up the same issues repeatedly and not seeing
significant changes, may be emotionally taxing work for
patients or caregivers. Acknowledging this work
privately with the person or within the team can help
highlight the effort required and how each person’s
contributions influence the project.
7. Invite people to contribute and take up roles.
Although it’s important not to burden team members,
it’s also important not to go too far in the other direction.
People get involved in projects because they want to
contribute, and may simply need an invitation to take up
specific roles. This could take the form of different people
taking notes at meetings, sharing meeting facilitation
roles, or leading activities. For example, at an in-person
team meeting, one of our patient team members led an
exercise designed to foster empathy and creative
collaboration across different roles in health care.33
8. Privately check in with people who are quiet. Team
leaders should check in privately with team members
who have not spoken up much, create space during
meetings that allows a roundtable contribution of all
members, and invite those who have been quiet during
the meeting to share their perspectives on the topic under
discussion. Conference calls can make this more
challenging, whereas in-person meetings allow meeting
facilitators to monitor body language. Regardless of
meeting format, however, this should be done with care
and sensitivity to avoid putting individuals on the spot.
Some people may prefer to comment individually, by
email or in a subsequent meeting after reviewing notes
and summary documents.
Theme 3: Facilitating good communication
Good communication is important to the success of any
collaborative endeavor. However, it is arguably more critical
within a team in which people may not have worked together
before and may be bringing different expectations about how
work ought to proceed.
9. Think carefully about labels, as they convey implicit
values. It is critical to become aware of acceptable and
unacceptable language. Some communities prefer
person-first language—for example, Bpeople with
diabetes^ rather than Bdiabetics^ or Bdiabetic patients.^
However, other communities may prefer to embrace
descriptors as part of their identity—for example,
Bautistic people.^ These preferences may vary across
and even within communities. It is worth taking the time
to discuss labels. At our first team meeting, one member
of our team noted problematic implications with the
term, Bpatient engagement,^ and noted, BThe
engagement is over: we’re partners now.^ We adopted
Bpartners^ as the term for members of our team. Another
member of our team has used the term Bpatient
investigators^ in other projects. Similarly, after a team
member noted that Bnon-researcher clinicians^ was not
an acceptable term, we also worked to appropriately
distinguish health care professionals whose primary job
function is patient care from professionals who divide
their time between research and patient care.
10. Beware of jargon and acronyms. All communities
develop shared language over time. When one member
of a community is talking to another member of that
same community, it is easy to slip into shared jargon
and forget that others may not understand. Our team
established an agreement that we would aim to avoid
jargon and acronyms while also being patient with each
other, recognizing that habits are hard to break. We all
welcomed requests for explanation when we
accidentally used jargon or acronyms. Teams may also find it
useful to make a living glossary, updating it as the
11. Occasionally regroup in smaller, more homogeneous
groups. At our team’s first in-person meeting, we
conducted some of our brainstorming work in four
smaller groups of people in similar roles (patient and
caregiver partners, clinicians and decision aid
developers, junior researchers, senior researchers) before
reassembling into our large group. Discussions in these
more homogenous groups allowed for free-flowing ideas
among peers with shared language, reinforcing the sense
of purpose within the team. Subsequent discussions in
heterogeneous groups allowed for deeper discussion and
understanding of different perspectives and terminology.
12. Create a visual map of the project. A map can help
everyone understand and talk about the ultimate goals of
the project, how the different pieces fit together, and where
the team is at each step of the way. Such a visual depiction
may provide greater clarity about the process and project
deliverables, especially to people who are newer to
research. We created our project map (Fig. 1) following
suggestions by multiple members of our team.
Relative Importance of Lessons
Some of the lessons are equally important for all research
teams, while others are particularly important for
heterogeneous teams—for example, the lessons related to establishing
common ground and a culture of respect and facilitating
communication. Table 1 summarizes the lessons’ relative
importance and offers references to literature aligned in principle
with the lesson.
Effective partnership can be both challenging and
rewarding, no matter who is involved and no matter their
background. It can sometimes be easier to work through
a difference of opinions between people in different
roles than between those in similar roles, and teamwork
issues such as interpersonal conflict may arise in any
team. Nonetheless, partnered research is a new paradigm
for many in health research. We hope these practical
tips help teams conduct meaningful and enjoyable
Acknowledgements: This work was funded by the Patient-Centered
Outcomes Research Institute (PCORI): ME-1306-03174. PCORI had no
role in determining the study design, the plans for data collection or
analysis, the decision to publish, or the preparation of this
manuscript. HOW is funded by a Research Scholar Junior 1 Career
Development Award by the Fonds de Recherche du Québec—Santé.
NMI is funded by a New Investigator Award (NIA) by the Canadian
Institutes of Health Research as well as an NIA from the Department
of Family and Community Medicine, University of Toronto. FL is
funded by a Tier 1 Canada Research Chair in Shared Decision
Making. DS is funded by a University of Ottawa Research Chair in
Knowledge Translation to Patients.
Corresponding Author: Holly O. Witteman, PhD; Office of Education
and Continuing Development, Faculty of Medicine Laval University,
Quebec City, QC, Canada (e-mail: ).
Compliance with Ethical Standards:
Conflict of Interest: During the course of this project, CAL received
salary support as Research Director for the Informed Medical Decisions
Foundation, the research division of Healthwise, Inc., a not-for-profit
organization (http://www.informedmedicaldecisions.org/). KS held a
contract with Animas through 2015 and subsequently a contract with
Tandem Diabetes Care. All other authors declare that they have no
conflict of interest.
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