Kendall Hall: Please kick us off by introducing yourselves and your organization.

Libby Hoy: I am Libby Hoy, the Founder and CEO for PFCCpartners. We started in 2010 to support health systems to implement the infrastructure for effective patient family engagement (PFE) to make care safer and improve outcomes for all. Since then we have expanded into Quality Improvement Organizations (QIOs), research teams, measure developers—basically anyone who wants to implement authentic and sustainable PFE practices. We help organizations to build patient and family advisory programs. Sometimes that’s a council, and sometimes that’s another method of engagement.

Stephen Hoy: I am Stephen Hoy, the Chief Operating Officer, and I have recently been working in the patient-centered measurement space with the American Institutes for Research (AIR). Libby and I both serve in the role of patient family advisor (PFA) for the Centers for Medicare & Medicaid Services (CMS), AIR, and small rural and critical access hospitals out here in California. We cover the spectrum in advisory programs as well as leading a national network of over 700 PFAs. I like to describe the relationship between PFCCpartners and PFAnetwork [Patient Family Advisor Network] as one where PFCCpartners creates the space for patients and families to inform healthcare, and the advisory network is what fills that space and serves as the experience we seek to infuse into the health system.

LH: We are a family-driven organization based on our collective experience navigating the health system raising three sons living with mitochondrial dysfunction and my own cancer journey.

KH: When you talk about authentic person and family engagement, can you describe that for some of our audience who might not be as familiar with this concept?

LH: Sure, to do that I’ll level set a little bit with how we're approaching the different terms that we're hearing in the environment. The phrase person and family engagement gained momentum as CMS began to use it in their engagement work. In our opinion, a person- and family-centered healthcare model is a noun. With that in mind, that's the model of care that we’re building that is rooted in individual patient priorities and preferences. Patient family engagement is then the active strategy that builds the model. It's the interactions and the conversations and insights that you gain from the patient and family perspective. It’s in active partnership and conversation in which we co-produce the outcomes we need. If we think about patient family engagement as an active patient safety strategy, as an engaged person in my care, I can work with my nurses so that they have good quality information about my fall risk or I can work with my healthcare team to ensure that my visitors follow infection control protocols. It’s using that patient connection as an additional resource and as a strategy to improve safety and outcomes. Similarly, if we bring that partnership into healthcare design, evaluation, and improvement, we can ensure that we're co-designing a health system that's really going to benefit the clinicians, the patients, and the families in terms of outcomes and the system, in terms of efficiency.

To make all of this authentic, we think about it in terms of applying a PFE strategy, no matter what you're working on. I think what we tend to see is PFE bucketed into patient experience work, and it takes more of a customer service approach, which in our mind really limits the effectiveness of that partnership because you're not getting a reciprocal relationship. Whereas, if you implement PFE in a safety program, for instance, it becomes really authentic when you bring patients in for the development and design stage of the program, when the person’s lived experience can help to shape what the organization is doing and the priorities for the intervention. At its most authentic, patient family engagement is a strategy that's based in the person's lived experience, combined in partnership with the expertise of our clinicians and our administrators starting as far upstream in the development of policies and procedures as we can get. When I think about inauthentic relationships, it’s when PFE doesn’t occur until down the line when the intervention has already been created and the engagement is merely intended for the patient to sign off on something that has already been decided. For example, in an authentic relationship patient partners would be engaged in planning the design of a research study, providing meaningful, valuable impact and insight into factors such as the primary research questions, the outcomes of interest, the data collection approach, and recruitment. Conversely, in an inauthentic relationship a patient partner may be brought in after these key decisions have been made, when there are limited opportunities for the value of the patient partnership to be realized. Reviewing a survey for language has limited impact, while patient partners may be able to influence whether a survey is the right tool or if the timing of implementation will get an effective response.    

KH: One of the challenges, it seems, is that you're trying to do this work in a system that's already been designed, so it's not something that can organically grow together. How are you approaching this?

LH: It is a challenge, and we've been on this journey for a very long time. I started as a Patient Family Advisor (PFA) in the mid-1990s, and we were ecstatic if we got to comment on the color of the paint on the wall. This has been an evolution over time, and as I look back on it and think about where we are now, recent pivotal points of change have been when improvement programs have required PFE. CMS mandated patient family engagement in the QIOs and in the Partnership for Patients (PfP) and Hospital Improvement Innovation Networks (HIINs), even though what that meant and how you did that was very nascent. It was sort of a double-edged sword because this created an opportunity for creativity for those that were really dedicated to it, but it also ran the risk of creating checkbox metrics and calling it good.

The approach that we at PFCCpartners take with health systems isn't so very different from what we need to take on as policy at a national level. That is, we go in and listen first. We listen to what the priorities are for that particular hospital or organization. They're all different, and even if there are some similarities, they all see themselves very differently. That first step is figuring out the strategic priorities that the organization is really focused on. Maybe they've been dinged for their Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) scores, so that’s where they want to start. Maybe they’ve seen an issue in their infection control procedures. We then work to tie in PFE as an active strategy. If you can come to an organization and say “I see you're working on reducing your readmissions; maybe it would help you to look at your discharge plan and how it's received by your patients and families,” it gives the organization a better look at what the problem actually is versus making assumptions or relying on data alone. Our objective with CMS and other federal partners is to understand their goals and then work with them to incorporate PFE as a strategy to meet those goals. If we want to create an equitable health system, how do we build in the infrastructure for engagement into all of that work so that we can leverage it as a strategy to improve outcomes and improve equitable outcomes? If you're going to really do that, then you have to build it into the budgets, you have to make space for it, and you have to measure it.

KH: How do you know when you have authentic PFE? Can you assess it through process measures, or do you strictly look to make the link to outcomes?  

LH: I described earlier that for PFE in clinical care, as well as in the design and evaluation of healthcare systems, we often advise organizations to think about where their priorities are in order to identify where they should start to foster authentic engagement – with bedside care or broader system considerations. We’ve also always contended that one without the other is not sustainable. You can't improve care at the bedside without changing the system, and you can't change the system if it doesn't affect the bedside. But, I think this is one area where we're really going to need to think about the system first when designing measures to help us know when we have authentic engagement. I do think that engagement needs to be closely linked to health outcomes, including health outcomes in the community. I think there's a tremendous opportunity that we haven't tapped into yet to connect with the public health system in our communities and really think about what actually happens to patients when we connect them to community resources. Right now, we rely on community-based organizations for that insight, but they don’t have any capacity to be able to produce systematic outcomes or collect that data. That’s a potential gold mine of information; we just haven't bridged the data collection approach yet.

I think that we need to pay attention to what PFE and system design really look like when they’re authentic. One way that we approach that in our work is when we match an advisor from our network to an engagement opportunity, we ask the advisor and the organization to both complete an evaluation of the authenticity of the partnership. By having both the advisor and the organization fill out surveys and conducting interviews with each, we get a really good picture of what authentic looks and feels like for both parties. I think this is really key because it provides multiple lenses into the engagement and gives us insight into how we can really develop the infrastructure around it. Authentic engagement doesn't just happen—it has to be intentional, and it has to have infrastructure around it. That infrastructure can help us see where there are gaps in authenticity.

KH: For an organization, is that the way it’s assessed—whether or not the engagement is effective or meaningful? The advisor feels like they're heard and their engagement is meaningful, and the institution feels like it's contributing to improvement?

LH: Exactly, and so the tactic we use with Person Family Advisor Councils (PFACs) really does tie back into the organization’s strategic priorities . . . working with the PFACs on priority setting at the beginning of the year and then with the organizations to determine whether the PFAC met those priorities. If it's authentic and it’s valuable to the organization, the PFAC should be feeding into the organization’s strategic priorities and helping to meet their goals.

KH: If we could go to patient safety programs, the federal partners, or other organizations leading patient safety work and say, listen, let's use five measures, whether process or outcome measures, that are really meaningful, what would they be?

LH: As we’ve discussed, some of these measures can easily become check-the-box metrics, and I am not critical because I do see that as an evolutionary step. I think the next step is to think about the intent and the expectation and go from there. For example, in having a pre-admission checklist, the intent is to set an expectation for patients coming into the hospital that they would be active participants in care. What is then needed is an evaluation confirming not just that the institution completed that task, but that, on discharge, the patients feel that they contributed. For example, do they feel that their outcome was improved due to the teamwork or partnership with their clinical team? Or, how many times did they participate in bedside rounding during their stay? I think that gives it a little more depth. For organizations that are new to PFE, it’s a perfectly fine place to start just tracking everything that you’re doing to engage the patient and family. However, as we move further along this road and as organizations advance their understanding and capabilities, what I’d like to see is that there is a paid staff member with dedicated time and financial resources specifically for PFE. It needs to be backed by the organization across the board, including policies and including budgets. You need the infrastructure to support it.

SH: When I think about this next evolution of patient engagement, it’s those connections to the community, building community resources, and understanding the challenges people are having in the community. The patient advisory programs that we build are the hospital systems’ best insight into the needs, challenges, and resources of the communities that they are serving. We need to evolve our PFE mechanisms to better understand how the resources of our hospitals can be mobilized through communities for improved health.

KH: You are really thinking total healthcare continuum and how social determinants of health may play a role, when very often we get siloed into thinking about outpatient versus inpatient. The patient is the constant across all of the settings.

LH: Exactly, and to leverage that as a strategy opens up so much potential in creating healthy communities.

KH: What are some of the lessons that you’ve learned from your work in inpatient and outpatient settings with the various federal initiatives (PfP, the Transforming Clinical Practice Initiative [TCPI], and QIOs)?

LH: I think there is such an opportunity to create consistency across settings so that PFE is a continuous strategy. How it is expressed in a given organization or in the specific projects they work on may be slightly different, but the approach to it, the policy written about it, the budgeting, even some of the measures used, should be consistent. Having a consistent approach would be incredibly helpful because it would drive the whole field at the same time, and in the same direction. I think engagement stays the same across whatever you're trying to do if we truly think about it as a strategy. Where it is applied, it looks different. It looks different in end-stage renal disease programs, in primary care, it looks different in the hospital and it looks different in quality improvement, but I think that consistency of approach where you look at PFE as a strategy would go a very long way.

A good example is readmissions. If we look at readmissions in the QIO program, we bring in that active partnership to work on those interventions. In the hospital setting, we have those conversations about redesigning the discharge process. In the TCPI, we can engage the patient and family perspective to understand better what the problem is that's causing patients to go back to the hospital and how primary care could have possibly filled that gap before they had to go back to the hospital. So it's the same strategies, it’s that interactive partnership that co-designs solutions so what you're focused on, the item you're focused on, is going to be different depending on the program. But the strategy is basically the same—it’s that interactive partnership.

SH: You asked earlier about how we work PFE into the existing system. What we have realized is that it’s through strong relationships. The most valuable collaboration or solution comes from strong, sustained relationships that transcend the PFAC meeting. When you look at health systems who expand their advisory programs, that snowball effect happens because of the relationship building that goes on and not limiting the opportunity for solution-based conversations to the council meetings. Structured PFAC meetings are a great way to start, but the true north is these active and relational partnerships. Those last, and those have the most impact.

KH: You know you've succeeded when, after the contract is finished, those people are still engaged in working with those facilities, right? It doesn’t have an expiration date.

LH: Exactly, and it is those relationships that help build the infrastructure, and then the infrastructure helps support those relationships. Right now is the perfect time to build those strong relationships, and organizations are actually looking to those as they build their telehealth services. They're going to their advisors and saying we need you to help us design and evaluate our telehealth programs because right now it's a great customer service tool, but it is not quality improvement-oriented, and we need to find out where the patients’ struggles are. New telehealth systems are a perfect example of where those open-ended conversations are so helpful. Patients and families don’t expect them to be perfect right away but do get frustrated when the only feedback being sought is with a customer service survey asking, did your physician pay attention to you and did you have any difficulty logging in? You can’t get everything through a survey—you have got to have some discussion. You're only getting information you think you’ll need with a survey, so what are the chances a quality improvement program is going to hit the target? With authentic engagement as a strategy, you’re getting the whole picture.

SH: This is a close one to my heart. The patient experience surveys are limited. As patients and families and as advisors, we’re all working to make things better for the next person. However, we need to be really careful as we move forward with how we measure patient engagement. I say the patient experience survey is a great start, but we can all rate an Uber, right? We know if we got from point A to point B, and we can tell you if a car smelled bad. But it requires special knowledge and expertise to know if healthcare was of value, or high-quality. I want to encourage us, the system, to be mindful of what information we think we need from people. Reporting on outcomes is great, how are you feeling, that’s good information, but we also need to be intentional about what we as the system should be measuring and absorbing.

KH: I was just thinking about return on investment. You want to see that these systems are putting dollars behind this as a way to indicate that they are serious, but they’re also going to want to see that they’re getting some kind of return on their investment. How do you show that?

LH: That’s the million-dollar question. I think we have to approach it in a different way than we would for a product or widget that you buy. I think we need to be thinking about what our quality improvement and patient safety initiatives achieved when we didn't employ patient family engagement as a strategy and when we did. So, if we reduced infection rates by 20% without engagement, did we reduce it by 60% when we had engagement from advisors as part of the strategy?

SH: When I think of ROI [return on investment], I think about what problems would we have solved in this year if our communities were co-owning and co-developing our health system? What problems and challenges might we have avoided if our communities were a truly integral piece of a health system?

KH: What do you think are the next steps, and where would you want to put your effort next?

LH: I think we would both like to blow out the boundaries of engagement and really implement it as a strategy that can be applied to whatever you're working on. I think there's a huge opportunity to create more doors for community members to participate with us as a strategy, but we're going to have to think really differently and creatively about the methods. A once-a-month PFAC meeting is going to continue because that can be a very good anchor, but we have to go further into the communities and move beyond surveys and into focus groups and listening sessions and try some new and different techniques to really hear from community members that we don't usually hear from. I also think that we need to work collaboratively with our public health network and realize that patients and families can be leveraged as that continuous thread that crosses all boundaries of health and well-being. Communities know what they need, they know what the problems are, and they know what resources they have or what skills they have to fix it. What they don't have are the resources to do it.

SH: What’s needed next is a full recognition of the amount of work that patient family engagement, authentic patient family engagement, needs. The ROI question, how soon does that come up? Are you going to just start doing this? A lot of the best programs start with no budget, just dedication and passion for the work. That can mean more than a big budget, but can you imagine if you had both? Not just financial investment, but investing time in patient family engagement and the listening and humbleness that comes with that. All of that ultimately establishes the trust that you need for this kind of work.

LH: One final point I would make is that we are so lucky we get to be involved in PFE and relationship building and to see that trust develop. It reconnects people to why they went into healthcare in the first place. When they're overwhelmed with measurement and with the day-to-day operations of a health system, patient family engagement gifts them insight into the impact they're having on people's lives and people’s health. I think that's a value-add that might be even harder to measure.