Patient Engagement

Complementary Approaches to Patient Engagement in Patient-Centered Outcomes Research

Article · November 28, 2018

Patient engagement is quickly becoming a central concept across the field of health care. It is seen by many as the missing piece that is necessary to improve everything from direct care and the patient experience to the effective development and translation of biomedical research. Providers increasingly find themselves at the center of these engagement efforts not only in clinical encounters, but also in their role as gatekeepers for patients being surveyed for satisfaction, recruited for system-level advisory roles, or involved in patient-centered research.

Clinicians and biomedical researchers have independently developed foundational tenets to guide their respective engagement approaches, with clinicians focusing on patient-centered care and researchers focusing on incorporating patient-centered outcomes research into their work. Taking the time to learn about and critically examine these compatible principles will improve their integration into practice. The ultimate goal is an integrated approach to patient engagement that draws from best practices in both care and research.

Patient-Centered Care

The patient’s role in health care has evolved and, as a result, a number of different terms have been loosely used to describe the engagement of patients in care. The most prominent term is patient-centered care; others include patient involvement, participatory medicine, patient empowerment, patient activation, and shared decision-making.

While there is no universally accepted list of the principles of patient-centered care, one influential summary has been provided by the Mountain States Health Alliance (MSHA), a nationally-recognized system of integrated health care that received the National Quality Healthcare Award from the National Quality Forum in 2012. The 10 principles highlighted by MSHA succinctly elucidate how health systems and health professionals can bring about a more patient-centered and successful approach to care. Their influence can be seen in a number of subsequent iterations of the defining principles of patient-centered care, including Picker’s Eight Principles of Patient-Centered Care and the Patient-Centered Primary Care Collaborative’s Shared Principles of Primary Care.

Ten Guiding Principles for Patient-Centered Care as Described by Mountain States Health Alliance

  1. All team members are considered caregivers.
  2. Care is based on continuous healing relationships.
  3. Care is customized and reflects patient needs, values, and choices.
  4. Knowledge and information are freely shared between and among patients, care partners, physicians, and other caregivers.
  5. Care is provided in a healing environment of comfort, peace, and support.
  6. Families and friends of the patient are considered an essential part of the care team.
  7. Patient safety is a visible priority.
  8. Transparency is the rule in the care of the patient.
  9. All caregivers cooperate with one another through a common focus on the best interests and personal goals of the patient.
  10. The patient is the source of control for his or her care.
Source: Adapted from an article in Healthcare Global.

As part of the effort to improve patient outcomes and experience, these principles coalesce around a few main themes that are intended to position the patient as central to his or her own care rather than as an object to be cared for. In patient-centered care, the priority is not only on particular outcomes, but also on the processes necessary for effective long-term care. In addition, caregiving and treatment are seen as a team effort involving clinicians and patients as well as family members, caregivers, and specialists. The environment in which care takes place, the way in which important medical information is shared, and the relationships upon which decisions are made and executed are also central to the patient-centered care approach.

Patient-Centered Outcomes Research

Engaging patients in biomedical research is commonly referred to as patient-centered outcomes research (PCOR). This approach emerged from the idea that engaging patients as partners and advisors in biomedical research would help to bring about more useful evidence and treatments to improve health outcomes. The Patient-Centered Outcomes Research Institute (PCORI) is a primary driver of this patient-centered approach to research. Using promising practices from funded studies and expertise drawn from the literature and its stakeholder panel, PCORI developed a framework for patient-centered research-driven practices. This framework is used to assess new PCOR initiatives using metrics across four underlying principles of engagement: reciprocal relationships, co-learning, partnership, and transparency and honesty.

In the PCORI model, patient-centered research processes are highly emphasized, with the idea that if researchers, clinicians, and patients are able to come together to work in innovative and equitable ways, new and better forms of research will result. By linking patient care and research activities, this model seeks to overcome the traditional hierarchy of researchers working in isolation, with clinicians and patients being passive receivers of knowledge. Fundamentally, for research to be “patient-centered,” patient engagement — the meaningful participation of patients throughout the research process — is necessary. By bringing together the expertise of researchers and clinicians with the lived experiences and perspectives of patients, the PCOR model uses a more collaborative approach to medicine to bring about the outcomes desired by patients.

The Relationship Between Patient-Centered Care and Patient-Centered Outcomes Research

While often framed as distinct approaches, patient-centered care and patient-centered outcomes research have complementary (and often overlapping) foundational tenets. It is essential for providers to acknowledge these similarities in order to have a more comprehensive understanding of patient engagement. This understanding will ensure that providers can effectively evaluate the results emerging from patient-centered research. Applying these principles to their own clinical practices will help providers develop an integrated approach to engaging patients in multiple roles. Such an approach will allow clinicians to more adeptly navigate between clinical care and research activities, ultimately improving the patient experience.

Patient-centered outcomes research builds on the principles of patient-centered care in a number of ways:

  • PCOR explicitly requires equity in terms of how patients (and other stakeholders) are included in the team and how decisions are made. This requirement implies the need for teams to develop a process for decision-making in which the patient’s voice is valued and influential. It also sets a higher standard for the inclusion of nontraditional stakeholders such as family members and other caregivers.
  • PCOR attempts to go a step beyond the principles of patient-centered care by requiring that all team members not only contribute their own experiences and expertise, but that they also acknowledge and value the unique contributions of the other team members and advance their own knowledge by working with a diverse and skilled team.
  • PCOR operationalizes what partnership looks like. True partnership goes beyond seeing the patient experience as a resource to be used and requires cultivating a mutually beneficial relationship in which roles are negotiated and all partners’ goals are considered.
  • PCOR builds on the patient-centered care themes of information-sharing and transparency by explicitly focusing on trust and honesty. This emphasis is especially important given the history of mistrust between medicine and some patient communities.

A Unified Approach to Engagement

While improved health outcomes is a goal shared by both the research and clinical communities, this objective cannot be achieved without particular attention being paid to the processes by which the goal is pursued. Health professionals need to not only understand the principles of patient-centered care and patient-centered outcomes research, but also synthesize them into their personal approach for engaging with patients in different contexts within the field of medicine.

This integration of patient-centered outcomes research principles into patient-centered care is the first step to a unified framework to patient engagement. As the multidisciplinary field of patient engagement matures, it will be important to create a shared vocabulary and to standardize how professionals are trained in patient engagement through graduate and continuing medical education. Staying current on emerging theories and approaches to patient engagement will help to ensure that clinicians and researchers are not reinventing the wheel as they answer the charge of engaging patients across the health care spectrum.

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