Where are you and your team on the continuum of engagement and partnership with patient-caregivers? Partnering is a long-term relationship. Fortunately, partnership breeds more engagement and more partnership. Take one more step on the continuum.
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The views and opinions presented in this podcast and publication are solely the responsibility of the author, Danny van Leeuwen, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
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Inspiration from Lacy Fabian, Michelle Lenox, Susan Haas, Ed Lomotan, Josh Richardson, Libby Hoy
As vaccines roll out, we think of vial to arm as the last mile.
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Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.
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Imagine fixing breakfast for your kids and leaving the meal on the counter? It needs to get to the table, the high chair, or the couch and then into the kid’s mouth. Earning money, planning meals, shopping, preparing, cooking, and fixing aren’t enough. They’re all necessary but not sufficient. Breakfast isn’t breakfast until it’s eaten. Think of all that can go wrong between the plate and the mouth – no time to eat, doesn’t taste good, disappointment, competition, crankiness. Think of the plate to the mouth as the last mile of breakfast.
The term last mile comes from telecommunications, utilities, transportation, and package delivery services. The last mile means getting whatever into consumers’ hands – the internet, electricity, the package. In transportation, the last mile is from the airport or train station to home. Delivery systems must consider the last mile, or all the upstream work would be for naught. Upstream means what comes before. In transportation, utilities, package delivery, everything is upstream of the last mile. Our websites and web businesses come before telecommunications. Electricity generation is upstream from electricity into the house. Until recently, UPS, Amazon, and other non-governmental delivery systems relied on the US Postal Service for the last mile in areas not profitable to serve like rural communities. The recent gutting of the US postal system threatens that system. In today’s COVID-19 world, we see the effects of underinvestment in the last mile of the internet. Disparities in access to high-speed internet make disparities in remote education worse.
Today, as vaccines roll out, we think of vial to arm as the last mile. Downstream of making the vaccine and upstream of the injection, the jab, is packaging, transportation, delivery, storing in freezers, dilution, not to mention finding locations to give the vaccine, hiring people to inject, and scheduling people to receive. OMG, who knew it was so complicated? What good are electricity, internet, delivery systems, vaccines if they can’t get to people who use them?
In healthcare research, app development, delivery, and innovation, we often miss the opportunity to invest in the last mile. The last mile is work, a lot of work. I often hear researchers, developers, healthcare systems saying, ‘why isn’t anyone using, taking, reading, doing whatever?’ Consider the diversity of people, their circumstances, their geography, their preferences, their culture. Imagine the upstream people saying, ‘I’m an expert, I know what works, I can’t possibly consider that diversity. It’s up to them to come to me, take what I prescribe, do what I say, use what I sell.’ For some, depending on how they calculate their expenses and profits, pound-for-pound the last mile seems to be the least profitable and least worthy of investment. Often solving the problems of the last mile isn’t on their radar at all.
Over the past 40+ years in healthcare, I continually wonder at the build it and they will come mentality. In what universe do they live? Whether devices, treatment, prescriptions, services, research, guidelines, apps, if people don’t use them, they’re nothing.
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Basic to appreciating the last mile in healthcare is understanding the life flow of regular people and healthcare workers’ workflow, then reverse-engineering the product, service, or whatever. Or start with people first, then select, design, and build. Sometimes I think that people developing products, services, guidelines, or doing research have so much expertise in their field, they’re muscle-bound by that expertise. They need people with lived experience with systems thinking minds and good communication skills to translate diversity for the professional experts. The flip side of health literacy is life literacy. Life literacy requires partnership with people who have lived experience and a wide range of abilities in governance, design, recruitment, analysis, dissemination, implementation, and evaluation.
PCORI (The Patient-Centered Outcomes Research Institute) speaks about a continuum of engagement ranging from stakeholder input to consultation to collaboration or shared leadership. I believe a continuum exists from passive, one-way engagement where stakeholders share their perspectives or feedback on a particular topic in a singular forum. Partnership, collaboration, or shared leadership reflects bi-directional flow of information and decision-making on a continual basis. Over the years, I advocated for healthcare professionals, innovators, administrators, researchers, and tech developers to increase seats at the table for people in the patient-caregiver community to bring relevance, life literacy, and sustainability to the teams and equity to healthcare. Relevance means that it solves a problem essential to end-users. Sustainability means the efforts continue after start-up funding ends and that people share the benefits by word of mouth. Equity means that diverse communities can access the benefits.
What does this have to do with the last mile? The earlier experts engage with, partner with the patient-caregiver community (the farther upstream), the more likely their healthcare research, innovation, operations efforts will be relevant, sustainable, and equitable. In my dotage (the older I get), I’ve come to accept that engagement and partnership cause discomfort and require a different kind of energy and expertise. It’s complicated. I now strive to increase individual and team self-awareness about their place on the engagement and partnership continuum and grease the wheels for us to take one more step along that continuum. Partnerships are relationships. We flirt, we date, we fail or succeed, we learn. But existing relationships are necessary to partner in the environmental scan (what’s happening in the big wide world), question asking, priority setting, and funding seeking phases – truly upstream. These relationships take time and effort. They aren’t everyone’s cup of tea. That’s why I say, where are you now in this continuum? What one more thing can you do to move forward? Fortunately, partnership breeds more engagement and more partnership. Thinking about the last mile last is ass-backward. The last mile comes first. Thinking about getting breakfast into your kid’s mouth last will ensure you’re late to work. Thank you.