The National Academy of Medicine/Planetree paper, whose full title is Harnessing Evidence and Experience to Change Culture: A Guiding Framework for Patient and Family Engaged Care, represents in my opinion a major step forward in building the knowledge base and strategy for changing the entire medical culture. (Disclosure, I contributed some input into the paper.)
I think it is important to give the full text of the first paragraph of the abstract, since it is such a useful manifesto for the whole patient partnering/engagement movement.
Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to ensure integration of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options, and it requires ongoing assessment of the care match with patient goals. This vision represents a shift in the traditional role patients and families have historically played in their own health care teams, as well as in ongoing quality improvement and care delivery efforts. PFEC also represents an important shift from focusing solely on care processes to aligning those processes to best address the health outcomes that matter to patients. In a culture of PFEC, patients are not merely subjects of their care; they are active participants whose voices are honored. Family and/or care partners are not kept an arm’s length away as spectators, but participate as integral members of their loved one’s care team. Individuals’ (and their families’) expertise about their bodies, lifestyles, and priorities is incorporated into care planning and their care experience is valued and incorporated into improvement efforts.
One of the greatest values of the Paper is its synthesis of a Guiding Framework. This provides a way both to understand how change can be made to happen, and a structure in which the research in support of the change to patient engagement can be organized. In other words, the paper is highly ambitious. It tries to create a theory of change, and then look at the state of the research assessing each of the elements in that theory. Moreoer, it is careful to include in the inventory and analysis a broad range of studies, not just the most formally structured ones. Such a document obviously will have huge impact and multiple roles going forward. Here, in one graphic, is the entire Framework. (This copy has the citation embedded on it, for appropriate sharing.)
I have to admit that the first time I looked at the above Framework I had some difficulty grasping its overall structure. But, actually, it is quiet simple. Basically, the idea of the flow for a strategy for change, from left to right, is that:
- The Organizational Foundations for cultural change are Leadership, and certain levers such as Assessment and Change Champions;
- That the Strategic Inputs into culture change are Structures, Practices, Skills and Awareness Building, and Connections;
- That the Practice Outputs sought are Better Engagement, Experience, Decisions and Processes;
- and that the Engagement Outcomes (meaning I think the outcomes that are sought to be the final product of the engagement culture) are Better Culture, Lower Costs, Better Care, and Better Health.
In other words, you need what is on the far left, to do what is in the column to the right of that one, and so on. Obviously, the real world is more complicated, and the arrows at the top attempt both to emphasize the direction of the logic and to capture some of that nuance.
What the Paper then does is for each of the areas and elements summarize the research in support of the impact and role of that element in the overall framework. So, for example, Outcomes are discussed at pages 5-8, Foundations at pages 8-9, Strategic Inputs at 9-15, and Practice Outputs at 15-17. There are examples of successful innovations falling into each of the elements throughout the text.
Based on this breakdown, the Paper then identifies those areas for which the research evidence is solid, as follows:
Within the strategic inputs section, there is a well- established research base for environmental features in support of PFEC. This evidence supports the need for a physical environment that increases family presence (Choi and Bosch, 2012), improves communication (Ajiboye et al., 2015; Rippin et al., 2015), improves sleep and relaxation (Bartick et al., 2009; Bauer et al., 2015), and may help reduce infection (Biddiss et al., 2013). See Box 9. Krumholz’s work (2013), however, demonstrates that the creation of a healing environment requires more than environmental enhancements; it also requires the reengineering of care patterns and systems that have been part of business as usual for years in health care, but that may potentially be compromising the well-being of patients precisely at times when we are trying to get them well. This work posits that by proactively addressing common environmental stimuli (like alarms, light exposure, etc.) and psychological stimuli (like forced fasting, pain, anxiety, and uncertainty), hospitalized patients’ physical and mental well-being will be better, which will result in a positive impact on their symptoms, function, and quality of life.
A number of studies were identified in support of the practices section of the framework. In particular, organizations embarking on the implementation of practices to facilitate shared decision making (Arterburn et al., 2012; Barry et al., 2008; Bozic et al., 2013; Elwyn et al., 2012; Ibrahim et al., 2013; Stacey et al., 2014; Tai-Seale et al., 2016; Vero et al., 2013), family presence and involvement (Coleman et al., 2006, 2015; Luttik et al., 2005; Meyers et al., 2000; Rosland and Piette, 2010; Rosland et al., 2011), advance care planning (ElJawahri et al., 2010; Volandes et al., 2013), and compassion in action (Del Canale et al., 2012; Hojat et al., 2011; McClelland et al., 2016; Mc- Clelland and Vogus, 2014; Rakel et al., 2011) can do so supported by research suggesting the potential of these strategies to drive improvements in outcomes. Pairing these scientific studies with practical implementation resources will be an important strategy for responding to two common sources of delay when it comes to PFEC implementation: the dual questions of Why do it? and How to do it?
Finally, the evidence in support of training to expand partnership capabilities of health care personnel suggests this as an important area of emphasis when building a culture of PFEC. Training in empathy, communication, and patient education emerged with a strong basis in empirical evidence (Atwood et al., 2016; Phillips et al., 2014; Riess et al., 2012; Tai-Seale et al., 2016; Wexler et al., 2015).
An Appendix provides cross references to research in support of each of the elements (pages 30-31).
Perhaps even more important for the future, the Paper also identifies those areas in which the research foundation is less solid:
The corollary area of emphasis—training to expand partnership capabilities of patients and families—is not as well supported. Logically, philosophically, and conceptually it seems apparent that we cannot rely on patients and families to inherently have the capacity to actively participate in their care in a system that was designed without them, and that they need support to build that skill set. However, evidence is lacking to back up this common sense assertion. Furthermore, despite the evidence supporting clinical training in ef- fective communication strategies to engage people to participate in decisions about their care, gaps persist around how to efectively engage patients and families to inform care delivery and design.
This research gap naturally extends into the connection-building activities in the framework, with only a few studies identified in this preliminary review to demonstrate the impact of such efforts to bridge the divide between how health care professionals are prepared to interact with patients and family caregivers in a way that supports their involvement and how the latter are prepared to engage.
In addition two other areas of particular need were identified, the impact of structures that specifically promote openness and participation among patients and caregivers and the relation of connection-to-purpose inputs, i.e. the impact on team members of their experiences of participation on the actual outcomes. Moreover, the Paper notes that research on patient engagement in research (which I have blogged about, also here) is in the very early stages.
Finally and most importantly, the Paper as a whole very effectively makes the case for the solidity of the research support for patient engagement (or patient partnering, as I prefer to call it,) and the Paper can and should be cited for that proposition at both the general and detailed levels.
I will be thinking more about the multiple ways that this Paper and the research behind it can be used by varied stakeholders, and look forward to sharing those thoughts. I, and I am sure the authors, would welcome such feedback.
This should be seen as a movement, not a funding initiative, and this step will prove important in creating the intellectual structure that will ensure its ongoing viability and success, regardless of the short term environment.