As more and more people echo that it’s going to take more than health care to care for our health, a few brave organisations are exploring what the other thing might be. One such organisations is Children’s Health in Dallas, Texas, who, together with the Business Innovation Factory (BIF) are seeking a deeper understanding of the social issues that affect health, and what might be done about them. I was lucky enough to speak with Leigh Anne Cappello, the Patient Experience Lab Director of the BIF, about their work.
Pritpal S Tamber: Hi Leigh. Let’s start with your assertion that while building primary care centers within underserved communities is helpful in terms of access to and cost effectiveness of sick care, it may not be sufficient to address the greater need of creating healthier communities.
Leigh Anne Cappello: That’s right, Pritpal. It’s not that building primary care facilities in our communities to improve access is ineffective, it’s simply that doing so without also addressing the social issues surrounding health is only getting the job half done. Families don’t make decisions about their well-being based solely on tactical considerations like where a clinic or facility is. They have deeply rooted values, beliefs, experiential truths, and cultural norms that guide their daily decision-making. If we are going to truly address the need of improving efficiencies and creating healthier communities, we need to be sure that we deeply understand our users and the realities of their everyday experiences.
PST: Ok, so how did you go about that in Texas?
LAC: At BIF we have a well-tuned process to create a clear understanding of the relationship between what people say, think, or feel, and what they actually do. For example, they may say it’s important to eat well and be active but there may be emotional, physical, or social reasons why they eat fast food and sit in front of the TV. Cost, transportation, or day care issues, for instance, may be getting in the way. In Dallas, we spent weeks interviewing families, shadowing them, and observing their behaviours, and also asked them to keep journals to document their thoughts (this is a far more accurate way to uncover realties than rely on memory). From all this work we created a series of insights and design principles for our work.
PST: That sounds pretty extensive. So what did you learn?
LAC: Quite a bit. The issues around health were neither simply an access issue nor an economic one. Many of the families we worked with did struggle to overcome all sorts of difficulties inherent to their economic circumstances, but we realised their challenges were multi-dimensional and unique to every family’s cultural and social norms. We ended up defining the ‘elements of wellness’, which served to address the whole family and the whole child. They included: whether they were able to mobilise personal resources, such as time, energy and money; whether they could control or influence their own behaviours; whether they had a sense of personal worth; whether they were able to call upon external resources; and whether they were able to make sense of information and the world around them.
PST: Those elements don’t sound like things hospitals can do much about; did Children’s Health walk away at this stage?
LAC: Not at all. We had lengthy dialog about the need to move the conversation upstream. It’s hard because hospitals have a long history of executing against the same processes and protocols that they have delivered for decades. But our client has a visionary leader who hired us because he recognized the importance of gaining a new perspective and finding a new approach. After a period of reflection, exploration, and organizational preparation, he asked us to go further; they wanted to know the meaning of family well-being and the conditions that would be needed to support it.
PST: So what did you learn about family well-being?
LAC: The most important thing we learnt is that it is not a destination, it’s a direction. Families don’t seek an absolute state of well-being, they simply want to know they are always moving towards it, despite pressures and set backs. We built on the ‘elements of wellness’ to define family well-being as an emergent state in which children’s physical, mental, spiritual, and social functioning are developed and nurtured in the context of familial and other influences. It is characterized by an individual and family position of strength through agency, esteem, resilience, hope, preparedness and comprehension. This informed our theory of change, which is that if we can stimulate the eco-system of a community by introducing new socially and culturally appropriate roles, rules, signals, interactions, and tools we can fuel a family’s ability to tap into their latent powers of ownership and agency, and take charge of their well-being through new relationships, actions, and behaviours.
PST: So if I understand you correctly you’re saying you believe the challenge is to create the conditions for well being, rather than creating well being, as such?
LAC: Yes. The idea is not to ask our health care system to try and directly tackle, head-on, some of the daunting challenges plaguing our country, such as poverty and economic disparity, rather to facilitate the opportunity for families to help themselves be better than they are today. Our large institutions have to leverage their resources, connections, and capabilities to move upstream in the health care conversation, and help create the conditions necessary for families to thrive. For example, rather than flying in with pre-canned wellness programs, what if they provided the resources, guidance, and support for families to start their own wellness initiative in their community?
PST: So where has this thinking got you?
LAC: We are experimenting with two concepts, both stemming from our theory of change. The first is ‘What’s Cookin’ Dallas?’. It provides families with the opportunity to conceptualize, design, and execute a Mobile Health Eating and Nutrition program. The families were given a van, mentors in all areas of program design and management, and the support from community agents to take ownership over a peer-to-peer learning and discovery experience around shopping, cooking, and nutritional information. The second is ‘Your Best You’, which takes teenagers, many of whom have the potential to be change-makers for their families, through a hands-on learning and discovery program to help them acquire the skills necessary to tackle any challenge life may throw their way, such as addressing broken systems that fail to serve their needs, or tacking emotionally charged conflicts and more.
PST: Fascinating. On the face of it, just another nutrition or teenager service but clearly part of something deeper.
LAC: Yes, precisely. We’re seeing parents, kids, neighbours, even strangers, banding together to make a difference in their community but our process is iterative. We observe, learn, and iterate, and will continue to do so throughout. The goal for these projects is to better understand the conditions necessary to affect the kind of change that helps families keep moving towards well-being. In the process we’re also looking for new business models to help families become more powerful agents of their own care, with the support, tools and guidance of the community in which they live, including the healthcare system. We know new business models are key to sustainable change. The work we have done here provides the foundation for this next step of work currently under consideration.
PST: Brave work, Leigh. Stay in touch; we’d love to learn where this approach leads.
LAC: Thanks so much, Pritpal, and will do! For real time updates, folks can follow the progress on our project page where we ‘work out-loud’, sharing learnings and updates in the form of blog posts and digital storytelling.
What I like most about this work is its uncertainty, and the team’s willingness to embrace it. All too often I hear people say ‘social determinants’ as though there is a switch that can be flicked and all will be well. Truly understanding social factors is clearly difficult and time-consuming work and I applaud Children’s Health and the BIF for trying to find what the ‘other’ might be. More health care organisations need to follow their lead.