Patient and Family Engagement Experience: A New Way to Elicit Patient and Family Feedback

Mayo Clinic traditionally has gathered the voice of the patient through survey data and through the Office of Patient Experience (OPE). The OPE allows patients and their families the ability to share their experiences by e-mail, over the phone, or in person. Even though these ways of eliciting feedback from patients are effective, we realized there were still gaps in getting real-time, proactive information from patients and their family. We saw this as an opportunity to explore what would be the best method to gather additional feedback from our patients around the various parts of our medical practice and business functions.

Traditional Patient and Family Advisory Councils

From policies requiring formal demonstration of patient engagement in order to receive reimbursement to endorsement by the World Health Organization and Institute of Medicine, it is now widely accepted that patient-centered care is a requisite for delivering high-quality and safe care.(1-4) Patient engagement creates transparency, offers accountability, empowers individuals, and builds trust between stakeholders within the healthcare system.(1,2,5-7)

Efforts to standardize and measure outcomes of patient engagement initiatives at an institutional level are still in development.

Although formal patient advisory groups have existed in the United States since the 1950s, efforts to standardize and measure outcomes of patient engagement initiatives at an institutional level are still in development.(8,9) The traditional Patient and Family Advisory Council (PFAC) structure is one of the most common, formalized methods to engage patients to improve quality of care and outcomes, with many national healthcare agencies endorsing best practices in PFAC Toolkits.(10-12) Studies from around the world have described the benefits of PFACs in improving patient communication through the design of educational materials, enhancing patient and staff satisfaction, supporting quality improvement projects, and informing policy and research development.(3,6,7,13-15) PFACs also provide the opportunity to ask further questions to delve deeper into issues.(15) Fostering rich dialogue through PFACs can provide a forum for patients to identify blind spots that staff may be unaware of as opportunities to improve clinic workflow.(6)

Traditionally, PFACs are composed of a set group of staff and patients that meet regularly to obtain patient feedback, ideas, and support for a variety of institutional projects.(2,6,16) A review of existing literature revealed that PFAC structures vary from institution to institution, generally consisting of 6 to 15 members and including patients, family members, and providers.(5,6,13,15,16) Patients typically are selected through a provider nomination process and volunteer their time.(13,15,16) PFACs meet multiple times a year, ranging from three times per year to two-hour meetings once a month, and serve out terms that range from as short as six months to three years.(5,6,16) At Brigham and Women’s Hospital in Boston, where 16 PFACs are assigned to focus on topic areas such as transplant patient experience and women’s health for trauma survivors, patients have shaped institutional project design, shared patient perspectives at staff meetings, and informed grant-funded research.(16)

Despite their benefits, PFACs do have limitations. Given the small size of PFACs, institutions often convene several PFACs that do not always communicate with each other to join efforts when working on similar projects.(2) Additionally, PFACs do not always reflect the diversity of the communities they are intended to represent, and increasing the size of a PFAC often is not feasible.(1,5,16) Many PFACs also are limited because they do not adequately include family members and caregivers, who give a unique perspective on and insight into the experience. In a study surveying patients unaffiliated with PFACs on how they would like to be represented through a PFAC, patients emphasized the need for including diversity in age, race, socioeconomic status, literacy, and health disability status, a goal that could prove quite difficult because most PFACs have a recommended size of 8 to 12 members, according to best practice guidelines.(1) Because PFACs require frequent attendance multiple times a year, scheduling conflicts, the need for regular child care, and health conditions can lead to attrition in membership, leaving PFACs with a need to find a way to fill unexpected vacancies.(5,15,16) The ongoing commitment of a PFAC can be hard for staff to sustain as well, highlighting the need to balance the burden of the frequency of meetings.(6)

Patient and Family Engagement Experience

Although a traditional PFAC certainly could be of benefit to Mayo Clinic Arizona, our growth and innovation calls for something more real-time and fluid. As a destination medical center in a large, growing metropolis, we also have a desire to touch a broad scope of patients and their families and seek attitudes from a cohort with great diversity—in age, race, gender, patient care need, disease state, and expectations. Despite the popularity of online forums, we believe that there is value in in-person interaction and live engagement. We thus created Patient and Family Engagement Experience (PFEX) events to better meet our need to engage patients and families in order to shape our practice.

A Mayo Clinic PFEX is a forum used to obtain targeted, direct patient feedback from established patients and families. Each event seeks to gather 25 to 50 patients and family members for an evening event in an auditorium. Patients and family are given the chance to eat and interact with Mayo Clinic staff and leadership representing the specific area(s) of interest for the event. About six patients and family members are seated with three Mayo Clinic staff members around a large round table.

Following a nonstructured dinner, a general welcome is provided, along with a presentation of ground rules for the event. The themes for the evening are reintroduced, and patients are asked to be candid, yet respectful, in providing feedback. Each table is staffed by a facilitator, a scribe, and someone who takes notes on a large poster board for key themes. Theme-related topics are introduced one at a time and shown on screens for patients, family, and staff to refer to. A designated amount of time is allocated to each topic to make sure each table is able to get through all the topics. At the conclusion of the two-hour event, the note-takers from each table are asked to share key ideas and lessons from the evening. Patients, families, and staff are then thanked for their participation and provided with small tokens of appreciation. The event lasts for approximately two hours. All of the collected information is transcribed, segregated, and distributed to practice and business leaders for feedback and process improvement.

The themes for each PFEX event are determined by organizational need and practice inquiry. Completed and planned PFEX themes thus far for Mayo Clinic Arizona include practice redesign, hematology and oncology, general inpatient care, emerging technology, and radiology services. Patients and families are selected based on criteria specific to the topic of the event. Patient names are reviewed and are removed if they have displayed any inappropriate behaviors or acts of violence when on campus for care. The patients are sent a formal invitation in the mail inviting them and a guest to the event. The acceptance rate for the first two events has been approximately 10% to 15% of those invited. This outreach via invitation has an added potential brand value as it reinforces our commitment to improving the experience, because the invitation goes out to hundreds of patients, asking them to attend and give their input on the specific topic. Engaged and willing staff members are recruited to assist in table discussion and transcription. These include physicians, nurses and other allied health staff, administrators, and practice leaders.

The total cost for a PFEX is approximately $150 to $200 per participant, which is similar to the annual price point for a PFAC that meets several times a year. PFEX costs are shared between the Mayo Clinic practice area being represented and the Mayo Clinic Office of Patient Experience. Events are planned to occur two to four times yearly.

Results

The PFEX events have provided our institution with valuable information to help us improve patient experience. Useful data and feedback have been collected on a variety of topics, such as patient appointment guides, way-finding, patient room design, family support, patient paneling, quiet spaces, billing, and financial services. The initial PFEX focused on institutional growth and practice redesign and provided valuable information to consider as we look to design new spaces and evolve in the ever-changing healthcare environment.

At the second PFEX event, with the theme “Cancer Care Journey,” we obtained 611 comments from 24 patients and family members. This information was packaged into a valuable summary report for our hematology/oncology practice leadership. Qualitative data were distilled into common themes, and we developed a “journey map” model to capture these insights in a humanizing way through narrative (Figure 1). The use of journey maps is well established within fields such as service design, marketing, and business as an analytical tool that uses design thinking methodology to capture empathy and identify insights that drive customer-centric care,(17,18) but adapting journey maps for use in the healthcare space is a new but growing practice. Our journey map model helped visualize the cancer care journey, identifying patterns that exist for specific patient groups as they engage with touchpoints within our institution and highlighting opportunities to improve the patient experience. The journey map model also enables comparison between different patient groups, recognizing that new and established patients often have different needs that can guide how and when to design interventions for patient-centered care.

Figure 1. Journey mapping the cancer care journey for new patients.

Patient and family attitudes about the Mayo Clinic PFEX events invariably have been positive. All of the patients and family members surveyed after the first event noted that their experience was positively affected by the event (Figure 2). Ninety-three percent of all participants from our initial PFEX event rated the event as very good overall. Additionally, 83% indicated high confidence in Mayo Clinic Arizona using their feedback and had a high likelihood of recommending PFEX to others (Figure 3). We elicited nearly identical feedback following our second PFEX event (Figure 4).

Figure 2. Impression of Mayo Clinic following initial Patient and Family Engagement Experience (PFEX).

Figure 3. Patient and family feedback from first Patient and Family Engagement Experience (PFEX).

Figure 4. Patient and family feedback from second Patient and Family Engagement Experience (PFEX).

Discussion

Seventy-seven percent of patient and family participants indicated their likelihood of recommending PFEX to others was very good, suggesting they believe this experience would benefit other patients and family members. Dukhanin et al.(1) reported that patients who were not affiliated with a PFAC noted a lack of awareness of PFACs and the need for adequate representation, because only 8 to 12 patients are selected to provide feedback. However, using the PFEX model, more patients are able to participate, increasing awareness of avenues for patient engagement and encouraging a culture of patient-centered care at an institutional level.

Our PFEX events and feedback did have some limitations. Because we lack widely and consistently utilized PFACs, we were not able to directly compare our PFEX event to a PFAC. Furthermore, we lacked a standardized way to measure outcomes of patient engagement initiatives, as with implementation of public engagement tools. Finally, the impact that the gathered feedback and positive attitudes regarding the PFEX event has on our survey data and OPE feedback volume remains to be seen.

Conclusion

PFEX events have proven to be a good fit for our innovative, growing organization and have enhanced our patient engagement efforts. We have been able to elicit invaluable, high-yield, practice-specific feedback without exhaustive resource investment. The feedback from patients, families, and staff has been favorable. For dynamic integrated delivery systems looking to engage with a broad scope of patients, PFEX events allow for increased, more diversified patient participation, a broad scope of content feedback, and significant patient engagement while mitigating resource and time burdens on patients and staff.

References

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