The Patient-as-Partner Approach in Health Care: A Conceptual Framework For A Necessary Transition

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Perspective

The Patient-as-Partner Approach in Health


Care: A Conceptual Framework for a
Necessary Transition
Philippe Karazivan, MD, MA, Vincent Dumez, MSc, Luigi Flora, PhD,
Marie-Pascale Pomey, MD, PhD, Claudio Del Grande, MSc,
Djahanchah Philip Ghadiri, MSc, PhD, Nicolas Fernandez, PhD,
Emmanuelle Jouet, PhD, Olivier Las Vergnas, MSc, PhD, and Paule Lebel, MD, MSc

Abstract
The prevalence of chronic diseases today experiences of illness; this expertise should involved in research and provide valuable
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calls for new ways of working with be welcomed, valued, and fostered by training to health sciences students.
patients to manage their care. Although other members of the care team. The Including patients as full partners in the
patient-centered approaches have patient-as-partner approach embodies health care team entails a significant shift
contributed to significant advances in the ideal of making the patient a bona in both the medical practice and medical
care and to treatments that more fully fide member of the health care team, a education cultures. In this perspective, the
respect patients’ preferences, values, true partner in his or her care. Since 2010, authors describe this innovative approach
and personal experiences, the reality is the University of Montreal, through the to patient care, including the conceptual
that health care professionals still hold a Direction of Collaboration and Patient framework used in its development
monopoly on the role of healer. Patients Partnership, has embraced this approach. and the main achievements of patient
live with their conditions every day and Patients are not only active members of partners in education, health care,
are experts when it comes to their own their own health care team but also are and research.

Let the patient revolution begin. Models in Transition have been inspired by patient-centered
—Tessa Richards et al1 perspectives and offer innovative ways
Over the past 20 years, paternalistic
approaches to patient care have been of involving patients in their own
care. For instance, Tom Delbanco and
I n recent decades, the epidemiological
losing ground. They have given way to
patient-centered practices,6 in which colleagues’18 work on inviting patients
to read their doctors’ notes has been an
transition from infectious to chronic health care professionals strive to reach
diseases has become a major public a shared understanding with patients important step in this direction. The PP
health challenge facing all countries, to respond more fully to their specific approach is rooted in such initiatives yet
regardless of their economic status.2 needs.7 Indeed, systematic reviews have takes a significant step forward into the
Chronic noncommunicable diseases, shown that patient-centered care results realm of true partnership in care, where
such as heart disease, stroke, cancer, in increased adherence to management the patient is considered a caregiver of
chronic respiratory diseases, and protocols, reduced morbidity, and herself and, as such, a genuine member
diabetes, are now by far the leading improved quality of life.8 Reducing the of the treatment team, endowed with
causes of death and disability in the number of diagnostic tests ordered and competencies and limitations just like any
world,3,4 accounting for two of every referrals made has improved health other member of the team (see Figure 1).
three deaths worldwide according to the statuses and efficiency of care.7 Although This approach aims to develop the
Global Burden of Disease Study 2010.5 patient-centered approaches have patient’s competency in care instead of
Our patient-as-partner (PP) approach undeniably contributed to significant merely taking into account her personal
appears both more relevant and better advances in care and to treatments that experience.
adapted to today’s challenges and the more fully respect patients’ preferences,
needs of most patients with chronic values, beliefs, and personal experiences, The Patient’s Expertise
diseases. the reality is that health care professionals,
especially doctors, still hold a monopoly As the French philosopher Michel
on the role of healer. Meanwhile, we Foucault19 reminds us, “one must
Please see the end of this article for information
have witnessed the growing influence of become the doctor of oneself.” At the
about the authors. heart of the PP approach is the notion of
alternative forms of medicine that foster
Correspondence should be addressed to Dr.
less asymmetrical power relationships caring for oneself (epimeleia heautou), a
Karazivan, University of Montreal Hospital Research concept that harkens back to the Socratic
Centre, Saint-Antoine Tower, 850 Saint-Denis St., between caregivers and patients and a
Montreal, Quebec, Canada, H2X 0A9; telephone: greater consideration of patients’ lived era—that is to say, to the birth of Western
(514) 890-8000 ext. 15485; e-mail: philippe. experiences and ways of knowing. medicine in Greece. Indeed, as revealed
karazivan@umontreal.ca. by Plato, Socrates’s famous maxim
Initiatives, such as shared decision “know thyself ” is a call to heed one’s
Acad Med. 2015;90:437–441.
First published online January 20, 2015 making,9,10 therapeutic education,11 expert own needs.20 Foucault19 also argues that
doi: 10.1097/ACM.0000000000000603 patient,12 and self-management,13–17 caring for oneself is, in fact, not simply

Academic Medicine, Vol. 90, No. 4 / April 2015 437


Perspective

Intervention
plan

Patient
(and relatives)

Paternalistic Patient-centered Patient-as-partner


approaches approaches approach

Figure 1 Three patient care models. In paternalistic approaches, the work of health care professionals is centered on the intervention plan, and
patients take little part. Patient-centered approaches put patients at the center of the health care professionals’ work and concerns. In the patient-
as-partner approach, patients are considered to be members of the health care team; like all other team members, they bring their unique expertise.
© Direction of Collaboration and Patient Partnership, University of Montreal, 2013 (reproduced with permission).

a philosophical principle but an actual on every decision. The doctor, nurse, Changing Roles, Cultural Shifts
practice that, throughout the ages, has physiotherapist, and other health care Recognizing the existence and the
commonly prevailed: To some degree, professionals each possess a certain validity of both scientific and experiential
every person has the ability to take care of expertise; similarly, so does the patient. knowledge implies that sometimes the
himself. Patients are already taking care of None of the major interprofessional best decision for the patient is to not
themselves, sometimes in ways that health collaborative care models argue that all take the medicine prescribed. Such a
professionals are not trained to recognize professionals on a care team must act proposition calls for a major shift in
(or are trained not to recognize), with together at all times and take part in all both the medical practice and medical
varying levels of achievement depending steps of the process. The PP approach education cultures:
on the normative framework chosen to does not argue this either.
determine success and failure. Although there have been changes, and
these are welcome, the powerful position of
Today’s much-hyped personalized many doctors and the lack of appropriate
Because self-care is a technique—that is, medicine movement focuses mainly training on how to work in partnership
an activity based on a certain knowledge on genetics.23 However, it also could with patients still prevent the appropriate
held by the individual20—we must encompass a personalized approach to use of patients’ expertise and wisdom.24
determine what knowledge a patient needs
health care that incorporates patients’
(or already has) to take care of herself. With the growth of chronic diseases, the
particular preferences, experiences,
When dealing with incurable chronic role of the health care professional is
and expertise and that would develop
diseases, experience becomes a well of no longer strictly one of healing; now it
their individual competency in making
critical information.21 Of course, the also includes accompaniment, solicitude,
patient, not the doctor, is more intimately care decisions. Indeed, if health care
professionals were to fully consider these and guidance as patients undertake
connected to the experience of illness: self-care. Health care professionals then
factors, many clinical dead ends might
must trust patients and acknowledge
The key to successful doctor–patient actually lead to breakthroughs, and many
partnerships is therefore to recognize their successes in care, however minor
current challenges might be overcome.
that patients are experts too. The doctor they might be. The idea is for doctors to
Scientific and experiential knowledge are
is, or should be, well informed about allow patients to actively take part in their
diagnostic techniques, the causes of complementary.21 Experiential knowledge own medical process, to recognize their
disease, prognosis, treatment options, and may eventually be supported by science if ability to provide valuable feedback, and
preventive strategies, but only the patient a number of conditions are met (among to entrust them with a certain degree of
knows about his or her experience of them, the quality of the relationship, the
illness, social circumstances, habits and
responsibility regarding quality and safety
patient’s self-confidence in her ability and the types of treatment decisions
behaviours, attitudes to risk, values, and
preferences. Both types of knowledge are to mobilize her experiential knowledge made by the health care team—of
needed to manage illness successfully.22 during the medical encounter, the doctor’s which they are a part—such that their
recognition of the importance and the involvement contributes positively to the
Seeing the patient as a caregiver does validity of this knowledge, etc.). The patient entire process.25
not mean involving him at every level herself could initiate such a relationship,
of care; it does not mean including him or she could do so in partnership with her Today, universities and research funding
in every meeting or consulting him health care professional. agencies have been called on to respond

438 Academic Medicine, Vol. 90, No. 4 / April 2015


Perspective

to these changes. In the United States, is done mainly by patients themselves. More specifically, we have recruited
the Patient-Centered Outcomes Research We have developed a formal recruitment and trained over 160 expert–patients
Institute, established by the 2010 Patient process and selection criteria, covering who participate actively in health care,
Protection and Affordable Care Act, such elements as reflective capacity and research, and training of health care
has approved nearly 200 awards to date ability to clearly express oneself (data professionals (see Box 1). Embracing
totaling more than $273.5 million to fund to be published separately). Patients are the competency-based curriculum of
research guided by patients, caregivers, truly the pivotal force in the DCPP. Health our medical school, these patients are
and the broader health care community.26 care professionals, students, academics, in the final stages of developing the
An example of such research is the and teachers gravitate toward them first (to our knowledge) taxonomy of
pilot program “Zone of Openness” in what has become an engaging and patient competencies (the work is led by
at the Palo Alto Medical Foundation highly innovative knowledge production coauthor Luigi Flora). This taxonomy will
Research Institute in California, which setting, completely integrated into our allow for the assessment and monitoring
was designed to dispel patients’ fear of medical school. of patients’ development of skills and
repercussions for asserting themselves
in clinical decision-making processes
and to help clinicians invite patients’ Box 1
points of view. In medical education, Components of the Direction of Collaboration and Patient Partnership (DCPP) at
the relationship-centered care initiative the University of Montreal, 2010
at Indiana University demonstrated
that culture change is possible at a large Education
medical school with a competency- • Seventy-five patient–trainers were recruited, trained—mainly by patients—and remunerated:
based curriculum.27 At Yale University, º Patient–trainers provide training in interprofessional collaboration to all our health
the Department of Psychiatry has sciences students32 (13 health care and social services programs, for a total of
approximately 1,200 students per cohort)
developed the Citizens Project, which
º Patient–trainers cofacilitate (with health care professionals) interprofessional discussion
provides peer mentor support services workshops. They give feedback to students regarding the integration and application of
and nontraditional classes geared toward the concept of partnership in health care from a patient’s point of view. The evaluation
the rights, responsibilities, roles, and questionnaires completed by students are a testament to the perceived added value of
resources of community membership involving patients in care processes.
to adults currently in treatment for a • Sixteen patient–coaches accompanied new expert–patients in the education, research, or
psychiatric illness.28 health care settings that were initiating or pursuing the patient-as-partner (PP) approach.
• A new mentorship program for medical students was developed (as a pilot project, with six
patient–student dyads for the first year): a patient living with a chronic condition is a mentor
In addition, experiential knowledge is
for a medical student throughout his or her studies, rounds, career choices, sharing the good
being shared between patients worldwide times and the challenges of the medical curriculum.
via healthtalkonline.org (formerly Health care
DIPEx from Oxford University), a Web • Since 2011, the DCPP has accompanied 26 clinical teams, most of them hospital based
site devoted to the sharing of patient (in primary care, oncology, and mental health, among other departments) in the greater
experiences. Furthermore, over the past Montreal area and the surrounding region, in the implementation of the care partnership–
four years, patient universities have continuous improvement approach developed by Paule Lebel’s team.
been created, most notably in Barcelona • Professionals and patients are trained to work together and set joint goals, which makes this
(Spain), Hanover (Germany), Paris approach innovative.
(France), and soon Marseille (France),29 º It is not about patients being invited to join a professional committee to help meet
offering programs to develop patients’ predefined objectives but about a team truly co-constructing knowledge and decisions,
in which everyone is trained to work together using the appropriate tools.
knowledge in various areas. Expanding
º A first target is set jointly, then tasks are divided and, in action, the contribution of each
on this idea, in 2010, the University of individual is mobilized, recognized by the other members of the team, and accepted and
Montreal (Canada) created the Office of valued.
Patient-as-Partner Expertise (now the • Preliminary results33 indicated a high level of satisfaction and a real change in the culture of
Direction of Collaboration and Patient health care settings toward a partnership that is no longer theoretical but actually embodied.
Partnership [DCPP]), co-led by a patient • Teams in primary care will start implementing the DCPP program; two of them did so in
and a physician.30,31 September 2014.
Research
Our PP Initiatives • Extensive involvement with the Canadian Institutes of Health Research (CIHR), the chief
federal agency responsible for funding health research in Canada
Rather than relegating patients to separate º Counseling role for the development of the CIHR Citizen Engagement framework—the
spaces (as in patient universities), the role of the framework is to better align funded research projects with patients’ needs
DCPP brings patients into already- (www.cihr-irsc.gc.ca/e/47275.html)
existing structures to create true º Membership on the Advisory Board of the Institute of Circulatory and Respiratory Health
partnerships, thereby recognizing that (www.cihr-irsc.gc.ca/e/45949.html)
they possess authentic, relevant, and valid º Membership on the External Working Group on the “institutes model review”—the
understanding and expertise that can mandate of this working group is to review the structure, role, policies, budgetary
framework, and slate of the institutes pertaining to their capacity to effectively respond
be immediately mobilized as a fruitful to current and emerging health research challenges and to take advantage of national
addition to the medical school curriculum. and international scientific opportunities to optimally deliver on CIHR’s mandate (www.
The recruitment of these patient partners cihr-irsc.gc.ca/e/47657.html).

Academic Medicine, Vol. 90, No. 4 / April 2015 439


Perspective

competencies in health care settings, • Assessing systematically the impact of Dr. Pomey is an associate professor, Department
education, and research. the PP approach on: of Health Administration, School of Public Health,
Institute of Public Health, University of Montreal,
• patient and provider experiences Montreal, Quebec, Canada.
The DCPP also plays an advisory role in
the development of practice guidelines Mr. Del Grande is a research associate, University
• quality of care and patient safety of Montreal Hospital Research Centre, University of
and policies that promote patient Montreal, Montreal, Quebec, Canada.
partnership for the Quebec Ministry • the acquisition of competencies by our
of Health and Social Services. These medical and health sciences students Dr. Ghadiri is a patient’s relative and assistant
professor, HEC Montréal, University of Montreal,
guidelines include quality improvement, • Studying and understanding situations Montreal, Quebec, Canada.
the fight against cancer, and primary in which patients do not want a Dr. Fernandez is a patient and professor,
care, among others. Finally, our patients partnership role in their care and those Département d’éducation et formation spécialisées,
advise executives and management in which it would not make sense to Université du Québec à Montréal, Montreal, Quebec,
teams in more than 30 health facilities Canada.
impose this role on them with the
in the province (over 350 directors and attendant responsibilities. Dr. Jouet is a patient and researcher, Laboratoire de
managers) regarding the establishment of recherche de l’Établissement Public de Santé de Maison
Blanche, Paris, France.
a strategic plan, a governance structure, Another interesting track for future
and work conditions that foster the research would be to consider the impact, Dr. Las Vergnas is a patient’s relative and director
development of partnerships with of doctoral research, ED 139, Université Paris X,
in terms of economics and the corporate Paris, France.
patients. presence in health care, of the changes
Dr. Lebel is an associate professor, Department of
in power in relationships that the PP Family Medicine, University of Montreal, Montreal,
The Way Forward approach implies. Quebec, Canada.

We are not advocating for a new The PP approach has its limitations
paradigm of disease or care that goes References
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no competing interests to disclose.
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knowledge gaps regarding this relatively Canada. practice. Patient. 2012;5:1–19.
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Academic Medicine, Vol. 90, No. 4 / April 2015 441

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