Over the past several years, the Accenture Federal Digital Studio, one of 30 Fjord studios globally, has taken a deep dive into the issues surrounding kidney transplantation, especially how to make transplants more accessible for more patients. With human-centered design, we explored the factors driving both patients’ and surgeons’ behaviors as they move throughout the transplant ecosystem, identifying opportunities that can potentially decrease the discard rate and increase the number of kidneys transplanted.
This is an important issue as chronic kidney disease kills more people annually than breast or prostate cancer, according to the National Institutes of Health.
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More than 1 in 7 adults in the United States are estimated to have chronic kidney disease (CKD), which often presents with no symptoms.
If patients progress to End Stage Renal Disease (ESRD), which occurs when a person’s kidneys can no longer function on their own, they can spend 5+ years waiting for a transplant. While they wait, these patients spend roughly four hours every other day receiving dialysis. A transplant could drastically improve their quality of life, and yet some 20 percent of kidneys donated post-mortem in the United States are discarded. How can that disparity be addressed?
Human decisions drive the transplant process
There are many institutions and entities involved in the transplant ecosystem, including hospitals, healthcare systems, and Organ Procurement Organizations (OPOs), as well as the patients themselves. But all these entities are made up of individuals, and it is largely human decision-making that drives the transplant process.
Surgeons need to determine whether a kidney is a good match for an individual patient. To do this, they consult multiple systems and other disparate sources of information to make a weighty, complex decision: Will this kidney work for this patient? Would this patient be better served by waiting for a different kidney to come along? What are the risks associated with this transplant?
The complexity of the process can sway decision making, causing some physicians to be overly cautious. Conscious and unconscious biases come into play and can drive a higher-than-necessary rate of kidney discards.
A simple example: Once a surgeon opts not to accept a kidney, it will be offered to another surgeon. That second surgeon may second-guess that kidney offer, wondering why it was previously passed over. Each time a surgeon declines that kidney, it may become more likely that the next surgeon in line will do the same, even if the kidney will work well for the right patient.
Meanwhile, a patient further down the list may wait years to receive an offer for a kidney like the one being declined. Yet, by the time it gets that far down the list, it has exceeded the recommended time thresholds, thereby eroding its ability to be transplanted successfully. And the longer a patient is on dialysis, the less likely any kidney they receive will have long-term success. So, the key is getting these kidneys that would otherwise be discarded to patients as early in their time on dialysis as possible to increase the likelihood of success.
These surgeons are making the best decisions they can for their individual patients with the information available. Increasing and modifying the resources available at this critical “moment of offer” can combat bias and potentially increase transplant rates and decrease discards.
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Increasing and modifying the resources available at this critical “moment of offer” can combat bias and potentially increase transplant rates and decrease discards.
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Similarly, patients must make their own complex choices, such as which transplant center will best meet their needs. If they don’t have resources to navigate that decision, they may not even know the role they can play in the process.
We were especially interested in exploring the divergent experiences across the kidney transplant network. While some hospitals have high discard rates, others have very high acceptance rates. This suggests an opportunity: While there may be problems inherent in the overall system, some are clearly navigating that system more effectively than others. The entire network can learn from these leaders.
Sparking conversations on the kidney transplant process
Accenture’s team designed a multi-phased research program to explore this issue. We studied emerging research, conducted a data analysis of existing reasons for discard, and held in-depth interviews with patients, transplant surgeons, nephrologists, transplant coordinators, and other stakeholders.
Accenture’s team members immersed themselves in the journeys of both patients and clinicians throughout the kidney transplant ecosystem to identify key moments where new solutions could have the biggest impact. We searched for actionable insights that offer context into behavioral patterns evident in the data and conducted root-cause analysis to ensure we were solving for the problems vs. the symptoms.
An important part of the design process was the opportunity to co-create with people in different roles across the ecosystem. Our team hosted virtual and in-person workshops that brought together diverse groups of people to ideate and create shared ownership of potential solutions.
For instance, one of our workshops brought together patients with surgeons, dialysis techs, nephrologists, OPO coordinators, and leading program administrators. In the workshop, a patient leaned across the table and told a leading surgeon how he’d happily have accepted any kidney to get off dialysis sooner. For a surgeon who has less patient contact than their nephrologist peers, this is an eye-opening perspective. The dialogue led to a collaborative ideation about opportunities to insert patient preference into the process along with clinical data.
Opportunities within the kidney transplant ecosystem
The discrepancy between patients needing kidneys and the high discard rate is not rooted in one particular process or step – rather, we looked at how certain elements impacted the entire kidney transplant ecosystem. Using a prioritization framework developed in partnership with our national experts, we evaluated existing best practices and the ideas that emerged from our co-creation workshops. After identifying 24 prioritized ideas, we began to develop concepts and testable prototypes that could generate positive change from both a top-down and bottom-up perspective.
One example - rethinking the Kidney Donor Profile Index (KDPI) as a predictive indicator of kidney value.
In KDPI, kidneys with scores above 85 - often from an older, less healthy donor - are more likely to be rejected and ultimately discarded. But research shows that even kidneys with high KDPI are, in many cases, better for a patient's health than staying on dialysis. An alternative idea is to replace KDPI with the Kidney Donor Risk Index (KDRI) that is already available or with a kidney-patient match score. This latter metric could communicate donor-patient compatibility as well as a weighted value for the scarcity of kidneys and the opportunity cost of staying on dialysis. It could even factor in patient preference – an idea that widely resonated in our workshops.
The team also uncovered value in finding new ways to visualize risk. At various moments, patients may be overloaded with extraneous information that’s hard to digest. Similarly, surgeons consulting multiple data sources are forced to connect the dots mentally, increasing the cognitive burden at each decision point. With new interfaces, both patients and practitioners could more easily and clearly see the relative risks and benefits associated with a given organ. Information driving surgeons’ decisions could be more consolidated and easier to navigate through these interfaces.
Additional opportunities emerged to support patients on their quest for information. We created a single front door, or online “hub,” to point patients and providers to curated, trusted content that can help guide patients, family members, and physicians through the transplant process. The hub offers a range of resources to support patients, empowering them to be more proactive in choosing their caregiver and their treatment path. Early testing revealed that such a hub addressed an unmet need – one successful transplant recipient shared how she often coaches newly diagnosed patients in a peer-to-peer format, and how helpful this tool could be in assisting those conversations.
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The first iteration of the hub also offers patients practical guidance on how to get a kidney sooner. For example, patients can multi-list at several transplant centers that are covered by different organ procurement organizations, rather than just at the center closest to home. They also can consider and consent to high KDPI or increased-risk kidneys, in cases where that less-than-ideal organ might nonetheless be a good fit for their needs.
As research continues on the problem of kidney discards, we see a number of opportunities for the medical community to push forward these investigations.
Healthcare officials could revisit the way in which high-performing doctors and hospitals are identified, in order to reward practices that reduce kidney discard. Best practices among the high performers could be more widely and aggressively distributed in the practitioner community. And stakeholders at all levels could begin to implement the many small and large system-design changes that grew out of Accenture’s work.
There is momentum now to change the way practitioners weigh their organ-acceptance decisions and the way kidney patients engage with the transplant process. It makes sense to seize upon this moment to make meaningful and lasting change. That type of change will not come from simply implementing new technological solutions – but instead, is created through introducing unique processes and perspectives that better match human behaviors.
And for federal agencies, this reinforces the benefits of human-centered design as an approach to problem solving. By building around the customer experience, human-centered design can lead to real-world solutions that often overcome long-standing hurdles that had previously been overlooked.