Meet Janalee Taylor
Janalee Taylor, APRN, CNS, CNP-BC, has been a much-loved part of the PR-COIN family practically since it was formed. Before retiring in late 2022, she had worked in pediatric rheumatology for 42 years. She started in Indianapolis at Riley Hospital for Children, working with Dr. Murray Passo in ambulatory and inpatient care. Initially, she and Dr. Passo were a “2-person team” with Janalee conducting many roles such as intake, interim history, follow up on labs, education, and scheduling of appointments. There were no fellows so Janalee had an expanded role. Ultimately, they were able to add a Physical Therapist, Occupational Therapist, and a social worker to the team.
Janalee obtained her initial Master’s degree as a Clinical Nurse Specialist majoring in the “Care of Children and Families at High Risk and Chronic Illness.” This served her well in her rheumatology career and also included focus areas of program development. Janalee worked at Riley Hospital for Children in Rheumatology for 8 years. Her husband’s job ended up taking them to Cincinnati in 1988. The day they arrived her husband had to urgently leave as his stepfather sustained a head injury resulting in a subdural hematoma. Alone with two kids and a moving van, she reached out to Anne Lovell, wife of Dan Lovell, who were the only people she knew in Cincinnati. Janalee had previously met Anne at Riley Hospital when Anne was doing clinicals for her advanced degree. Of course, knowing the situation, Anne and Dan were immediately there to help and invited them into their home. Through her connection to Dr. Lovell, she interviewed with director of the Pediatric Rheumatology, Dr. David Glass. As there were no clinical openings available at that time, she was hired as a research nurse coordinator.
Janalee did genetic research, including being involved in the complex genetics of juvenile arthritis. Also, augmenting her research endeavors, Janalee served as the allied health professional representative on the PRCSG (Pediatric Rheumatology Collaborative Study Group) for 10 years. When there was a clinical position open in the rheumatology clinic, she shifted to clinical focus, serving as the Clinical Nurse Specialist, and collaborated with the entire team including Dr. Joe Levinson, who was considered one of the “founding fathers” of pediatric rheumatology and who established the Division of Rheumatology at Cincinnati which is the longest standing rheumatology division in the country.
Janalee enjoyed being pushed as hard as she had been at Riley. When coming to Cincinnati, she recalls Dr. Lovell telling the fellows, “If you want to come here, you have to have a fire and passion in your belly.” She knew that she too must exhibit that same fire and passion.
In 2002, Cincinnati Children’s received a grant from the Robert Wood Johnson Foundation titled “Pursuing Perfection.” The grants initial focus was to improve care for chronic disease of which JIA was chosen as one of those disease groups. This initiative set in motion Janalee’s interest in quality improvement. She soon realized that in order to improve care you have to focus on the system of healthcare delivery. The entire team must be involved and most especially the patient and family as they are the recipients of our care.
One of Janalee’s passion had always been self-management and helping families manage living with a chronic disease. She dug right in and began writing evidence-based guideline for self-management and holding seminars for implementation across the institution. Janalee notes that in most cases 95-99% of healthcare is delivered at home, thus it is important for patients and families to have a clear understanding of how to manage their disease.
Eventually, Janalee felt the tides shifting toward becoming a nurse practitioner, so she obtained a second Master’s Degree from the University of Cincinnati and became certified pediatric nurse practitioner in 2004. A few years after that, she began her involvement with PR-COIN with the launching 2010-2011. While at Cincinnati Children’s, she said she had the privilege of working with Dr. Esi Morgan the founder of PR-COIN who had the vision of multiple centers being involved and has since expanded to include 23 centers. “Centers create a shared vision and goal and are able to track their outcomes and data, learn from each other, and share and adopt new practices in order to improve outcomes. That’s one of the huge values of a Network like PR-COIN. “ Janalee served as Affiliate Faculty and Co-Director of QI for Rheumatology at Cincinnati Children’s.
Janalee reminisced about a different time in healthcare, in her Indianapolis days, when she had an experience that changed how she viewed families and their role in care.
One of her patients with severe systemic JIA was accompanied to clinic visit by her grandmother, who ended up having urgent health problems and needed to be hospitalized. Thus, the patient didn’t have a way to get home, so, yes you guessed it, Janalee took her home that night (which she comments would never be allowed today). She tried to take on all the tasks of giving meds (which the patient was on about 10), warm baths, PT/OT exercises, and preparation of meals. The next day she ended up two hours late for work. When the mom was finally able to pick her up and asked how she was doing, the girl said, “Okay, but Janalee forgot to give me prednisone this morning!”
“It’s those kinds of things, when you’re in the family’s shoes, that you really understand this is what they are going through. I thought as providers WE must have lost our minds asking families to carry out all of the tasks, in addition to school, homework, extracurricular activities, careers, as well as sibling’s schedules and obligations. There’s no way we can truly understand what families are going through unless we take the time to really talk with them.” Janalee shared an adage which was adopted at Cincinnati Children’s regarding care of patients/families…..”Nothing about me, without me”. That is something to live by!
Janalee has seen a lot in her years in the field and eras of changes in treatment. She recalls the generations of treatments for JIA such as aspirin, then NSAID’s, then Methotrexate, and now the era of biologics which has dramatically improved outcomes for children with JIA.
She took care of the first patient that received Etanercept. The patient had been in a wheelchair for about 4 years. After starting Etanercept, she came back for clinic visit in approximately 8 weeks and walked to the scales! “I started crying! I said I have to get Dr. Lovell. I told the patient to sit back down in the chair. Dr. Lovell came around and she stood up and walked to the scales.” The entire staff was applauding and many crying. Biologics ended up taking off from there. She states that Cincinnati has led the majority of trials for the biologics and she is proud to have participated and witness the explosion and expansion of treatment.
Each patient has their own story, and different struggles, but they each inspired Janalee. “The stories often bring tears to my eyes. But that’s what keeps me going. Many become like family. She says when she retired, one family shared a memory they had of her. They said “I remember you coming to a couple Maddie’s birthday parties.” One time, they were looking for their daughter and went asking “Where’s Maddie?”. Someone answered, “Oh, she’s out in back playing with Janalee.”
Janalee says it has truly been a privilege and an honor to provide care the patients and families and to also have collaborated with rheumatology health professionals across the country as well as internationally.
Janalee has received numerous awards. Most notably in 2015, she received the Charles B. Harding award from the Arthritis Foundation. The Harding award is the highest award of the Arthritis Foundation and awarded to the volunteer who best exemplifies the highest standards of concern and commitment to the arthritis community. In 2018, she was also honored with the ARHP Lifetime Achievement Award. The Lifetime Achievement Award recognizes a current or former member of ARHP whose career has demonstrated a sustained and lasting contribution to the field of rheumatology and rheumatology health professionals.
Although Janalee is retired from clinical practice, she will not be far from the PR-COIN family. She will serve as a consultant to PR-COIN providing outreach and support to clinical teams, assist as needed with QI projects, coach teams regarding self-management and shared decision-making, as well collaborating with coordinating center and committees as needed. Of course, she is very excited to be able to spend lots of time with her family---husband, children and their spouses, and her grandkids—"all of who are the loves of my life and who make me smile, laugh, and love every day!”