Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.
Guest Blog: Terms of Engagement: Co-Creating Our Future with Patients
| December 12, 2011
The world used to be much simpler, or at least it seems that way to many of us who practiced health care in the '70s and '80s. The prevailing paternalistic attitude that permeated the health care system at that time meant that patients would enter our facilities seeking an expert opinion, be given a definitive diagnosis, and sent on their way. The assumption on both sides was that the wisdom and expertise imparted at the clinic or hospital visit would be passively transferred, pending the next acute intervention of our patient with the health care system.
Today, we physicians are confronted with an explosion of new technology, increasingly complex interventions, and an evolving focus on the need for longitudinal support of health issues, requiring increased involvement of our patients. While we may use different terms'engagement, involvement, empowerment, activation'in our discussions, all of them speak to the need to have active participation from patients and, in many cases, their family and other caregivers. But while we often have a clear understanding as citizens of our role as we interact with mechanics, lawyers, or financial advisers, the roles and responsibilities of physicians and patients have become somewhat blurred.
The work on health care homes over the past few years has clearly identified the need for patient engagement and involvement as a critical element in successful implementation of the model. But as we continue to design and incorporate these new approaches into our delivery of health care, it would behoove us to consider exactly what 'engagement' looks like in the context of improving care.
Jessie Gruman, PhD, president of the Center for Advancing Health (CFAH), defines patient engagement as 'actions individuals must take over time to obtain the greatest benefit from the health care services available to them.' This concept of patient engagement addresses the specific actions our citizens/patients will have to incorporate into their lifestyles in attempting to maintain their health. Far from the acute, episodic practice of the past, the notion of patient engagement in health care requires components of physician-patient teamwork and patient participation unimaginable not so long ago.
Engagement and Health Care Redesign
There are several reasons we need to focus on the need for engagement as we continue our work in redesigning health care.
First, patients are being given increasing responsibility for both finding and making use of the resources we in the health care system offer. Questions of how we provide that information to patients'and, at the same time, simplify the effort required for them to obtain it'are important.
Second, the increasing demands on our patients mean that the disparity between those who are engaged and involved and those who aren't engaged will grow. The unintended consequences to those who are or become 'unengaged' (e.g., due to social and intellectual issues) will require significant attention. It may lead to these groups suffering even more significant health issues due to their inability to access care and participate with the terms we've identified supporting engagement.
Third, the 21st-century focus on 'patient-centered' care provides an opportunity to institutionalize the elements necessary for successful patient engagement.
As we talk about developing engagement, there are at least two overlying issues that we providers need to consider.
To begin with, what are the 'rules of engagement'? Do our clinics and health care systems clearly articulate to our patients, in a resource that is readily accessible and understandable, what we expect when they interface with us'whom to call for an appointment, when services are available, whom to call in the middle of the night, what to do with a billing concern, whom to see when their preferred provider is unavailable? I suspect many would have difficulty in identifying such a resource document that would establish even those basic 'rules.' More fundamentally, have these rules been developed in consideration of what our patients might need, or are they still designed for the benefit of those of us working within the health care setting?
A shift to patient-centered care, in an effort to drive engagement, will often require a rewriting of the rules that have held us in good stead for years. Whereas in the past, the provider has assumed that merely telling a patient what action was necessary was sufficient, in today's patient-centered world we will need to provide specific actions that would be helpful, framed against an understanding of the patient's values and resources. Ensuring there will be access to the system when the patient needs it'not when it's convenient for the provider'will require a shift in our thinking about schedules and availability.
But as we change the models used to deliver health care, and even as we rewrite the rules, we need to fundamentally begin to identify and create the terms of engagement. It is in this area that groups such as the CFAH and other patient advocacy groups have focused much of their work. We are talking about creating an understanding and agreement between the health care provider and the patient/family that lay out the roles and responsibilities for all, and that recognize the increasing need for mutual interdependence' acknowledging that neither of us alone can solve the problem; we need to work together.
Behavioral Elements of Engagement
In a white paper published in 2010, the Center for Advancing Health outlines 10 behaviors that will be needed at some point, in some combination, by citizens during their experiences with the health care system. [The paper may be downloaded from the CFAH website, www.cfah.org, by choosing 'Supporting Patients' Engagement in Their Health and Health Care' in the 'Recent CFAH Publications' menu.] In brief, patients must:
- Find safe, decent care
- Communicate with health care professionals
- Organize their health care
- Pay for health care
- Make good treatment decisions (elements of shared decision-making)
- Participate in treatment
- Promote health
- Get preventive care
- Plan for end of life
- Seek health knowledge
For all of these behaviors, there are lists of specific activities that provide concrete examples of how they might play out in practice.
This behavioral definition of engagement has the potential to address several critical areas. If we expect our patients to meet these elements of engagement, it is imperative that we evaluate how we as organizations provide the environment that supports this level of involvement. Do we provide the resources that support those seeking to become involved and engaged, or is the complexity of our system nonnavigable to the average person? Beyond the availability of educational materials, sharing opportunities, and technical support, do we as clinicians demonstrate behaviors that would support patients who are actively participating in maintaining their health?
Take, for example, patients' use of the Internet. How many physicians continue to express frustration, often manifested by rolling eyes, body language, or terse comments, when confronted with a patient carrying a thick bundle of printed material from the Internet? Rather than consider what we might be missing in meeting the needs of our patients, we are critical of them for seeking information from other sources. How we react, the questions we ask, the invitation we send through many different actions'all these will be critical in supporting the engagement we're expecting, and needing, in the new world of health care.
There are at least three types of activities that are critical in patient engagement: sharing information, shared decision-making, and responsibility for care. As we expect our patients to move from the traditional, passive role to becoming active, questioning, participating partners, this behavior change will present a significant challenge to many practitioners. In recognition of that challenge, it is critical that we in health care begin to think concretely and actively about our role in creating the environment that is essential in leading to engagement.
We can argue philosophically the need for an empowered patient. But there is little debate about the need to create an environment and a culture that will lead to the engagement of our patient population in becoming and staying healthy. The 10 behaviors cited by Dr. Gruman are a framework for the discussion. They allow us to consider what it is we're asking of our patients, but also what we will need to create and provide within our health care system'and across the community'if we're to successfully accomplish the vision of a healthy population.
So as we continue our work in reframing the health care system in which many of us reside professionally, we need to address not only the roles we will have in this new world of health care, but also how we can begin to move from what has been a provider-centric model to one that focuses on the patient.
Only by including patients at many levels of our planning and, in effect, cocreating that future, will we begin to understand what it will take on all sides to ensure that we have the engagement of everyone in achieving the healthy tomorrow we all desire.
- One Small Step for Patient-Centered Care, One Less Barrier to Engagement ' Jessie Gruman
- Patient Engagement: Experts Talk about Challenges ' Shoshanna Sofaer
- Time to Tango: Impatient With Progress on Patient-Physician Partnerships ' Jessie Gruman
- What's Expected of You at Your Doctor's Office? ' Stephen Wilkins
More Blog Posts by Gary Oftedahl
Gary Oftedahl, MD is Chief Knowledge Officer at the Institute for Clinical Systems Improvement (ICSI) where he works to use systems approaches in improving health care, focusing on the value of the collaborative process. He has helped create and lead collaborative initiatives on culture change, human factors in the ambulatory care environment, transitions of care in treatment of heart failure, and use of patient satisfaction in improving quality of care. This article originally appeared in Minnesota Physician 25(7): 1, 10–11, copyright 2011, Minnesota Physician Publishing, and is reprinted here with permission.
Comments on this post
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|Lauren M says|
December 13, 2011 at 9:12 AM
Gary...it was wonderful to see that you acknowledged patients have a role to play in system redesign, though it would have been great to outline some explicit ways in which they can/have done this. In working with multi-stakeholder collaboratives and provider organizations there is often a struggle to understand what patients could contribute to delivery system redesign. You and the ICSI team started down this path during work with the organization's patient advisory council and the Palliative Care Shared Decision Making Committee when formulating a "conversation map"...a SINGLE TOOL that works for both care providers and patients/families when making decisions about palliative/end of life care. The tool itself is certainly important, though what's even more exciting is the process by which it was developed...in collaboration with patients/families/caregivers as well as other stakeholders...from the very beginning! I'm looking forward to the day when more physicians/providers/hospitals see patient engagement as something other than focus group/market research participation and include them in redesign efforts. As you well know, Oregon, Maine, South Central PA, and Humboldt County California have also taken steps in this direction in their efforts to partner patient/family advisors with ambulatory care practice improvement teams (many of which are working toward Patient Centered Medical Home certification). Bev Johnson and the Institute for Patient and Family Centered Care (www.ipfcc.org) have been doing this work for many years in the hospital setting...they have several resources that speak directly to the "rules of engagement" you refer to in your post. I hope that other readers will find time to explore these and other materials that address ways patients/families/advocates can be involved in (re)shaping the way care is delivered.
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