Welcome to Cleveland Clinic!
Observing the transplant patient journey up close
In late March, Team Panacea had the privilege of visiting the Cleveland Clinic to interview organ transplant patients and other subject matter experts up close and in person. Previously, MedRespond had worked with Cleveland Clinic to bring informational programming to heart surgery patients. Currently, we’re in the process of figuring out how to expand the liver transplant program. Our team was invited to get a closer look at the liver transplant patient experience, identifying breakdowns and opportunities we could implement in the MedRespond platform.
Visiting Cleveland Clinic
Our day at the clinic started early at the hospital, where patients being considered for liver transplant were beginning evaluation week. During this week, patients come in early Monday morning and spend the next few days at the clinic absorbing a mountain of information regarding the transplant surgery, medications, rehabilitation, and insurance.
According to national liver transplant averages, only 40% of the people who come to transplant evaluation week actually make it to the organ transplant list, and of that remainder, 25% of people die waiting on the list. At any point during evaluation week, patients can also discover they may not even qualify for transplant, be it for other health reasons, such as they are too sick to survive surgery or too healthy to warrant being placed on the list, or for logistical reasons, like not having a designated caregiver to take care of them or insurance not covering transplant surgery.
Evaluation week can be extremely draining on even the most optimistic of patients, and it was extremely informative to see this process up close. One immediate takeaway from this observation process was that patients should not be expected to absorb all information as if they were not dealing with liver failure.
Between managing the symptoms of their illness to information overload to even jet lag, patients are exhausted and not in a place where they can absorb information effectively. For future design, we will be sure to emphasize the design of digestible and easily reviewable information, as well as adding layers of redundancy by including caregiver educational sections as well.
Patients Turned Volunteers
Prior to sitting in on our first evaluation week information session, we got to interview Matthew Miller and his wife Lisa Vegas, a pair of hospital volunteers who had been through the long and harrowing liver transplant process together. Matthew had gone through the liver transplant process from end to end, dealing with the emotional hardships of waiting for transplant and recovery, as well as the physical hardships that come with managing chronic liver disease and the resulting symptoms. Lisa, his wife, was the exemplar of a caregiver extraordinaire, having been by Matthew’s side through the full journey, managing Matthew’s health in every single way and form. This included several different roles: caregiver, advocate, financial aid, driver, travel agent, cheerleader, expert — the list goes on and on (and she shared the whole list). Their journey of hope was so inspiring to transplant patients that the Cleveland Clinic now has the couple speak to incoming transplant patients and caregivers every evaluation week and check in with patient-caregiver teams throughout every pair’s transplant process.
After talking with Matthew and Lisa, we had the chance to observe the evaluation session up close. Even for the short window that we were there, the experience felt like a complete whirlwind of information (Matthew even referred to it as “taking a drink of water from a firehose”). The patients in the room were in varying states of lucidity and composure, and very understandably so. We found ourselves getting overwhelmed pretty quickly; the burden of this information on caregivers and patients is immeasurable.
At the end of the presentation, Matthew and Lisa took the stage and dialed the information back, focusing on the patient/caregiver experience as told by a former patient/caregiver team themselves. Almost immediately, you could feel the energy of the room change — patients and caregivers were hanging onto every word of what they were saying, some even brought to tears by Matthew’s before/after surgery pictures of his journey to recovery. Maybe it was their energy, or maybe it was the way patients could relate to what they were saying, but the bottom line was hearing information from former patients themselves is more engaging, credible, and potentially hope-instilling than just hearing from doctors/nurses. As a result of this, we definitely intend to explore the patient testimonial aspect further in our future design work.
Immediately after the evaluation information session, we went straight to the liver transplant coordinator team to talk more directly with a social worker, liver transplant program manager, and Cleveland Clinic’s content moderator. Hearing the clinical perspective on the transplant process showed us several things, like how many moving parts just one transplant surgery involves or how patients and caregivers require support on several levels including informational, physical, emotional, and financial. Managing one’s health is a hard enough battle — on top of this, patients and caregivers also have to fight with insurance red tape and healthcare logistics. In the case of the Cleveland Clinic, they have intentionally built in several layers of support throughout the liver transplant process to make sure patients and caregivers have access to support every step of the way. For MedRespond, we intend to serve as a resource extender to help fill in any informational gaps that patients need to revisit along the way.
Visiting the Transplant House
After the clinic, we headed straight for the Transplant House, which is a nearby housing community that provides affordable, temporary housing and a welcoming, supportive community to organ transplant patients and their families. Here, we interviewed with several patients and caregivers across the community to hear about their specific experiences through the transplant journey.
It was an intimate (and humbling) opportunity to see the patient journey up close, both in discussions with participants but also by looking at their environment and observing the way they arranged their medications in their own homes or how they exchanged information with their caregiving team.
In addition to interviewing, we also took the opportunity to speed-date with these participants, showing them several storyboards of different concepts we were exploring to understand their needs. Speed-dating allowed us to get the patient/caregiver perspective on some of our ideas as well as gave us the chance to ask more direct questions about some of the pain points in the patient journey, like with insurance or finding information from credible sources. We will use this feedback to further refine our ideas and dive more into prototyping.
Takeaways
This trip may have been short but was jam-packed with information and insights about the patient-caregiver experience. Some of our key takeaways from talking directly with patients and caregivers as well as CC staff include:
- The liver transplant process is disruptive, invasive, and dramatically impacts a patient’s quality of life before and after surgery
- Transplant patients should not be given the cognitive load of managing all information related to their illness
- More so than other illnesses explored thus far in our research, transplant patients and caregivers share the burden of disease
- While most patients and caregivers like and want control, a minority find that relinquishing control can be comforting if they trust their care team
- Social connection and community can be important, credible resources for both patients and caregivers — as such, patient and caregiver teams are keen to communicate with others who have had similar experiences and benefit tremendously from peer engagement
As a result of the trip, we’ve officially decided to dedicate our scope for capstone to managing the information flow from beginning of transplant referral to patient transplant surgery.
Thanks for having us, Cleveland and Cleveland Clinic!
Stay tuned for next time when we bring you updates on our wire-framing and other early stage prototyping!
About this PublicationWe’re writing the MHCI 2019 Capstone: Team Panacea Publication for a couple of reasons.First, we want to give you an exclusive behind-the-scenes tour of our capstone experience: the successes, failures, thoughts, insights, and innovations.Second, we would love to engage with you around the healthcare domain (Pittsburgh’s #1 industry!), so please follow / clap👏👏👏 / comment / share /reach out to us — we’d love to hear your thoughts
