Complex Care Journeys Need a Better Map, Personal Network Analytics Can Help

We have long known that patients who have good support tend to have better outcomes. We’ve typically sourced that support from patients’ families. That is problematic because:

• Families are smaller and often disrupted by divorce today.
• Families are geographically separated; 40% of American adults live an average of 700 miles from relatives.
• Family members are often employed and already provide child- and/or senior-care.
• Older widowed or divorced people often don’t remarry; for the first time in history, single adults outnumber married adults.

Fortunately, Personal Network Analytics reveals that people have more support available than what families provide. It also shows how to find it. Where? The Family Network is only one of their eight Life Networks. Everyone has seven others, populated by people who can help. 

Then, as patients, they also get support from a Healthcare Event Network, so named because, like other Event Networks, it is populated with people who help during the event and then disperse afterward.

Unfortunately, current healthcare systems often fail to encourage patients to seek support beyond their family and fail to help them understand their Healthcare Event Network. This case study serves as an example showing ways to address these weaknesses by enhancing journey research.

Transplant Case Study 

This study describes a man who, at age 29, was diagnosed with a rare disease – Primary Sclerosing Cholangitis (PSC) – and told he would eventually require a liver transplant, which he did, three years later. That was 20 years ago.

He has since become an expert on the transplant experience, coaching other patients, educating transplant navigators, and serving as a patient representative on FDA Advisory Committees. 

Applying Personal Network Analytics to his experience yielded new insights that can benefit transplant patients and also serve as a model for similar studies to help others facing complex health journeys.

Life Network Analytics

In step one, we identified his Life Network connections at the time of his PSC diagnosis. They numbered 286. That would be typical for someone in his demographic: a single young man who lives in a rented apartment, does not have a pet, and is focused on building a career.   

In step two, we identified the impact on his Life Network connections when he became ill due to PSC and, in the coming months, navigated a day-long pre-transplant qualification process, secured insurance coverage, and eventually, the transplant itself.

Color-coded gold are 20 people, all members of his Family Network, who supported him during that time. His principal caregiver was his girlfriend, who later became his wife. His parents and members of his close-knit extended family also pitched in.

Represented by text boxes without color are the 176 Life Network connections he lost during those months: those in his Career Network, Social and Community Network, Spiritual Network, and in the team sports he played. 

In step three, he determined which, if any, of the 176  Life Network connections he lost could have been kept if:

• He and his transplant patient navigators had known about Life Networks and had mapped his connections, and
• His transplant patient navigators had provided him with information about what he would need, including sample messages to use when he reached out to others to engage their support. 

Color-coded green are the 170 of those 176 lost connections that, in retrospect, he is certain would have been willing to help, if only he or someone on his behalf had asked. What kind of support?

• Had he known to tell his employer he would not miss any more work than a woman on maternity leave, he believes he would not have lost his job (and therefore his health insurance).
• Had he seen the large number of colleagues and friends in his networks, he would have asked them to sign organ donor cards, promote organ donation, or help in practical ways, like ensuring his girlfriend or parents got dinner after long days at his bedside.

Transplant Event Network Analytics

Information about transplant patient journeys was not readily available on the web at the time of his transplant.

A patient searching the web today would find multiple journey maps. Color-coded gold are the 22 total connection types they would see: 12 providing outpatient care and 10 providing inpatient care.

Our Event Network information architecture, however, reveals that the Transplant Event Network is significantly larger and more complex, with 278 connection types: 109 providing outpatient care and 169 providing inpatient care. Our number is larger for two reasons.

• An aided-recall approach improves completion and accuracy.
• We include everyone patients engage with during their care: appointment and billing clerks, receptionists, and nurses. Every encounter is integral to the experience, and, as every patient and caregiver knows, it is meaningful, for better or worse.

Patient Reactions

How does an expert patient with two decades of experience react? Quoting him:

• “This gave me lots more insights. Focusing on specific networks allows me to see the impact it had on me and the people within those networks better.”
• “Lacking comprehensive guidance, I lost my job, and my friends, and my family was overwhelmed as a result. I didn’t understand what was happening to me, so I couldn’t ask for help. I didn’t know who to ask or what to ask for.”
• “Lacking mental health support for me, my caregivers, my friends, and even my co-workers had great amounts of anxiety, which never really went away. It’s a 24/7/365 problem.“
• “After losing my job and insurance, the transplant center sent me on a wild goose chase to get coverage. It was a full-time job for six weeks, as I went from one government office to another and was rejected each time. I finally got insurance because a friend worked for the state of New Jersey and knew people in the governor's office.”

He also had insights about caregivers, especially his girlfriend:

• “Caregivers need support from someone they can call the first time they do it alone at home. I needed to do 100 days of IV medication at home after the transplant. That meant having IV medication shipped to the house. I had a PICC line and had to hang up from somewhere. They gave me an IV pole, but we had to calculate drip rates and stuff like that. When I think back, it would have been nice to call someone when we did it the first time. 
• “My girlfriend had networks that would have been glad to support her if she had known where to look. I was in the hospital longer than planned, and she couldn't take any more time off.  It would have helped us more easily find others who could step in.” 
• “This wasn’t an option for us at the time, but now there are state and federal programs that provide that kind of support. A guide that helps people find those sources of support would be a great help to them.”