Partnering for Healthcare Delivery Innovation

Partnering with patients and families in the health care delivery innovation process is vital for cultivating patient-centered innovations that improve experience, satisfaction, and outcomes of patients and families.1–3 The term “families” used in this article is inclusive of parents, guardians, kinship caregivers, and others involved in caregiving roles. Advocates urge health systems to increase the meaningful involvement of patients and families in system redesign and health care delivery innovation.4,5 Health care delivery innovation refers to developing novel and useful products, services, and ways of working that improve organizational and patient outcomes.6However, partnering with patients and families—particularly family members who navigate health systems for children’s health care—can be exceedingly challenging. Taking care of children with complex medical conditions can already feel overwhelming, and families may not feel able or empowered to suggest ideas for improvement. Even when they do, providers who are busy and stretched thin may be unable to act on family members’ suggestions.To start to partner with patients and families in innovating, Healthcare Transformation Lab, Center for Innovation in Care Delivery, and Patient and Family Advisory Councils (PFACs) at Massachusetts General Hospital (MGH) implemented an innovation contest.7 The contest was publicized as the Ether Dome Challenge, after the hospital’s historic operating theater called Ether Dome, where the use of ether as an anesthetic was first publicly demonstrated. This was to highlight the initiative’s focus on innovation. Similar versions of the contest were designed and administered at MGH to solicit improvement-oriented ideas from clinicians in the past.8–10The contest with PFACs took place between July and December in 2022. All PFACs at MGH, representing different patient groups and organized by disease center (eg, Cancer, Heart and Vascular, Pediatric) and location (Charlestown Health Center, Emergency Department) were invited to participate. The tagline, “Ideas from Patients and Families: Nothing about us, without us,” promoted the contest. First, a 4-week idea submission phase invited all PFAC members to contribute ideas for improving the patient experience. Next, a 2-week voting phase invited PFAC members to vote and select the ideas they wanted to see implemented. Top-voted ideas were invited to submit detailed proposals, scored by departmental leaders and key parties at MGH to assess feasibility and impact. Two ideas emerged as winner and runner-up from families who were part of the pediatric PFAC. The winning idea proposed to develop a resource plan that provides information for families with children who have complex chronic conditions after discharge from the pediatric intensive care unit (PICU). The runner-up idea proposed to create an easy-to-access repository of information and resources to support families when their child is in the PICU.After concluding the innovation contest in December 2022, family members who came up with the winning and runner-up ideas (ACS, MBH, and LL), a frontline nurse (DBC), the PICU nursing director (KW), a human-centered design expert (HN), the pediatric PFAC administrator (SC), a project manager (PM), and a researcher-observer (OSJ) met regularly to elaborate, pilot-test, and implement these two ideas.Partnering in the process of innovation has enabled families to move from feeling helpless to feeling helpful. Families taking care of children with complex medical issues often experience secondary trauma and the grief of not having a healthy child.11 “Having the opportunity to have our voice heard is huge, especially as parents of kids with medical issues. We have our own trauma narrative. If someone can benefit from my experience, it’s so helpful and empowering. I’d argue that this is what helps us bounce back from trauma and move toward experiencing post traumatic growth,” explained Dr Miri Bar-Halpern, a family member and a licensed clinical psychologist. Posttraumatic growth (PTG) is the experience of positive growth as a result of giving meaning to traumatic life events.12,13 Participating in the innovation process has contributed to PTG for families, as trying to make a difference for other people has given meaning and healing to their difficult experiences. Moreover, the intentional request for partnering signaled that a large institution like MGH was open and interested in learning from patients and families. Being asked where and how to change care delivery was in stark contrast to families’ typical experiences in the hospital—being told how things will be, how their child will be treated, or how things are usually done within the system. The meaningful partnering between families, frontline clinicians, and middle and senior managers of the hospital helped families to feel heard, seen, and empowered to advocate for the children in their care.Below, we—the families, clinicians, hospital staff, and research-observer—describe our partnering to develop, prototype, and implement innovations from families: what facilitated our unique partnering, what was difficult, and our recommendations for future partnering.In addition to families and clinicians, our group included personnel from innovation centers at MGH, whose primary work responsibility was to improve and innovate care delivery. These individuals coached the clinicians and families in using human-centered design and innovation methodologies. They also provided project management support, which included scheduling meetings, inviting key parties to meetings to get their input and buy-in, and assigning and following up on tasks. Their support was especially critical because families and clinicians had limited bandwidth, exposure to innovation work, and access to key relationships to move ideas to implementation. Sandra Clancy, a PFAC administrator, expressed appreciation: “Parents can come to me and say, I want x, y, and z changed, but I don’t have the capacity to help them. Parents can articulate ideas but there isn’t a way for them or anybody to carry out those ideas. So having access to Hiyam, Paula, and Olivia was very helpful.”Assembling a multidisciplinary group helped to amplify, legitimize, and cultivate family members’ voice.14 “Putting together a multidisciplinary team, with providers and various hospital employees is really helpful. As a parent, if you’re only interacting with the provider, it is easier for your voice to get lost,” explained Ashley Conti-Smith, a family partner. Multidisciplinary partnering was also helpful for nurses. Kimberly Whaley, the PICU nursing director, said, “As clinicians we are pulled in so many directions. Even when we have ideas, we don’t have time or know how or where to go to implement them—how to get a patent, build a prototype, navigate institutional channels.” Other hospital employees from social work, information technology, electronic health records, and other departments joined group meetings on an ad hoc basis to answer questions and share insights from relevant prior efforts. Having different perspectives from various parts of the hospital allowed the group to develop a solution that built on multiple perspectives and did not reinvent the wheel.We used videoconferencing software for regular meetings. This helped accommodate busy and geographically distributed families and clinicians and overcome barriers related to transportation and childcare faced by families.For families and clinicians, partnering meant spending time and effort on innovation work without pay and making time after regular work hours or during the weekend for meetings and tasks. “As working parents, this is all volunteering. It’s value-based and personally important but navigating the schedule for meetings and making the extra time was a lot,” shared Dr Miri Bar-Halpern, a family partner. Mass General Brigham, the health system that includes MGH, is considering instituting a policy for compensating PFAC participants.Innovating is inherently uncertain because it involves creating new products, services, or work processes. While the group aimed to develop innovations to support families during and after a child’s PICU stay, there were no clear steps to guide progress toward these goals. “It sometimes feels like taking steps up and then steps back down. There isn’t a roadmap. You don’t know who to reach out for what problem. That unknown is not conducive to innovation. The unknown might inspire the innovation, but it doesn’t help the process,” Devin Chaves, a PICU nurse, said. Still, the progress that the group has made is evident “when we think about where we started and where we are now. We know that we have advanced,” Chaves added.Although families and clinicians felt energized by the partnership, it is still important to consider how the hospital can recognize and reward their involvement. In our context, there was an event to celebrate the winning ideas from families immediately after the innovation contest. The event brought together the families, other PFAC participants, and PFAC and hospital administrators to honor the families’ ideas and participation. This event helped families feel seen and learn that their voice is valued. In addition, we presented our work during the Pediatric Grand Rounds at Mass General for Children. Grand Rounds are formal meetings in which health care professionals and trainees gather to discuss medical cases. During this time, families and clinicians discussed the identified problems, solutions, and progress to date, and the personnel from innovation centers discussed the innovation contest and the paradigm shifts required to facilitate partnering between clinicians, hospital key parties, and families when designing health care delivery innovations. Being invited to present at Grand Rounds signaled respect for families and clinicians and affirmed the value of their time, effort, and input.Successful family- or clinician-led health care innovations warrant strong partnerships among families, frontline clinicians, and departmental leadership. While an idea may originate from family or a clinician, it is often not feasible for one person to implement a project alone—collaborative support and institutional connections are essential. We recommend that hospitals create structures that enable families to share their perspectives, as they are uniquely positioned to identify pain points in care delivery. Partnering with a clinician—particularly one in a department aligned with the project’s focus—can help families navigate institutional pathways and gain credibility. Dr Miri Bar-Halpern, a family partner, proposed offering families a handout with ways to get involved in innovation and share insights from their experiences.A key starting point for innovation—especially in settings without dedicated innovation resources—is to engage existing PFACs or patient groups or to organize forums and events that actively seek ideas from patients and families. Collaborating with hospital volunteers can help organize events and foster a culture of inclusion. Connecting with academic medical centers or universities may provide opportunities to engage graduate students in fields like technology and design who can bring fresh perspectives to health care innovation.Family partners sensed that their contributions were critically needed in the beginning of the innovation process when the group identified and defined the problem and then brainstormed patient-centered solutions. As the work progressed to implementation, family partners felt they had less to contribute than hospital staff, who were better positioned to address the practical considerations of testing and applying the proposed solutions within the context of day-to-day care delivery. “As parents we helped to identify an issue or problem. When we move from theory to implementation, we need the hospital staff to tell us what would work and wouldn’t work. So as time went on, we were there more for updates. What is the role of the parent when figuring out the nitty gritty of where things fit in the day-to-day hospital operations?” explained Lynnette Lovasco, a family partner. Family partners struggled to be present at every work meeting and even experienced guilt when they could not join meetings. These challenges highlighted the importance of setting clear expectations early on about when their participation was most essential.It is essential to encourage families and frontline clinicians to speak up with ideas for improvement and take ownership in creating health care delivery innovations. In our context, the innovation contest and follow-up meetings for implementation gave families a chance to voice concerns and suggest improvements to the health system. During meetings, families were invited (or called on) to share their input or to give feedback on prototypes to be pilot-tested, in case they felt unable to speak up on their own. Frontline clinicians, such as nurses, also often “feel uncomfortable with asserting, ‘This is my idea,’ and taking charge and leading the work,” Chaves said. He explained, “Everyone is innovating in their own way whether they realize it or not. Physicians might be better at this with education, resources, and grants to pursue innovation, but for nursing and other specialties like OT [occupational therapy] and PT [physical therapy] it hasn’t been thought of as an option” and added that this work helped him to learn to “own the things you are accomplishing and being proud of that.”In between meetings, the project manager ensured that families and clinicians were included in emails and project updates and received credit for their ideas and suggestions. “Once you hear from parents and move forward with their idea, it’s important to keep the parents in the loop until the end. Paula made sure that I always got the emails. Nobody wants to come up with an idea and be told, thanks for the idea, now we’re going to run with it. MGH could have developed our ideas, but they chose to continue to involve us in the process. You get more buy-in from patients when you involve them,” shared Lovasco, a family partner.The process of partnering for innovation was gratifying for us for several reasons. First, we are developing solutions that truly integrate the perspectives of families, frontline clinicians, and hospital administrators and staff engaged at various points of our innovation process. For the winning idea to create a post-PICU discharge resource plan for families, we collaborated with the hospital’s information system team to enhance existing electronic health record functions. Several nurses are now pilot-testing the template we developed. For the runner-up idea—a resource app for families during a PICU stay—we created a blueprint, identified an app developer, and secured funding from a foundation to build a pilot-ready minimum viable product. Second, this process of partnering for innovation was gratifying also because families felt heard and helpful as they actively created solutions to the problems they experienced firsthand. This process contributed to their healing and well-being after their child’s medical trauma. Families also gained a deeper understanding for the time and effort involved in health care innovation. Lastly, while many clinicians understand the importance of patient-centered innovation, it is not always apparent where they can start or how to organize partnering opportunities with patients. The innovation contest and the subsequent meetings provided structures for clinicians to learn to innovate and collaborate with families and other staff who provide key support to scaffold the partnering work. We hope this article encourages more partnering among families, clinicians, and hospital administrators to develop and scale patient-centered health care innovations.We thank the Connell Family and the Fredman Family Foundation for their generous philanthropic support for this work. We also thank Cindy Sprogis, Margaret Martin, Helen Scarr, Gianna Wilkins, Colin Rice, and Liza Nyeko for their support with implementing the Ether Dome Challenge with Patients and Family Advisory Council members at Massachusetts General Hospital.