By Nelson Jen An Chao, M.D., MBA, and Krista Rowe-Nichols RN, MSN.
According to the Institute of Medicine, patient-centric care is defined as “providing care that is respectful of and responsive to individual patient preferences, needs and values, ensuring that patient values guide all clinical decisions.” To fully understand patient-centric care and how it’s applied to research, we’ll look at one of our trials, which produced groundbreaking results based on a patient-centric hypothesis, showcasing why patient-centric care matters and how researchers can measure patient-centric care, as well as looking to the future for the continued pursuit of patient-centric research.
The Most Groundbreaking Results from Patient-Centric Research
Our team developed a cancer research clinical trial with the hypothesis that allowing patients to recover in the comfort of their own homes, while having clinical care administered by a specially trained transplant staff, would improve patient safety. The goal was to minimize complications, such as graft-versus-host disease and infections, improve quality of life and increase overall patient experience.
In this trial, titled “A Controlled Study of Stem Cell Transplantation Medical Home Care Compared to Standard Hospital Care,” we were able to study an innovative and patient-centered approach allowing post-transplant recovery to take place in the patient’s home rather than in the hospital or outpatient clinic. The patients, who were able to go home for brief visits during their post-transplant hospital stays, revealed improved gut bacteria levels, better appetites, and improved quality of life.
Why Patient-Centric Care Matters
Patients are at the center of what we do every day. We are continuously challenging ourselves to evolve based on the best evidence available, ensuring patients have a voice, live longer, and feel better, while contributing to overcoming cancer in the future. Patient engagement throughout the process makes it even more successful for all involved.
In acquiring a vast amount of knowledge from the patient population we worked with, we also learned how important engagement from the patient’s primary caregiver is to the success of our work. Our standard of care model leans heavily on the support and buy-in of our patient’s caregivers, but the perceived burden of the patient’s care being delivered at home was not fully realized until we began to provide in-home care.
How to Measure Patient-Centric Care
Patient-centric care is best measured using a variety of different methods and technologies. For our research, the hope was that in maintaining the intestinal microbiota and homeostasis there would be less inflammatory pathology. That helps prevent some of the most life threatening post-transplant complications.
We quantified these results through regular collection of stool samples before transplant and at various time points over the first six months of the patient’s recovery. These samples would eventually undergo further processing and genomic analysis by one of our institutional collaborators.
Additionally, we tracked patient-centric care through a variety of transplant specific clinical outcomes, including patient nutritional status, and reported quality of life using a variety of validated patient reported symptom instruments, changes in the skin microbiota and cost.
Seeing positive results, we recommend researchers emphasize patient-centered care because the outcomes are transformational when the patients are at the center of our work. Some advice for other researchers:
Be prepared to collaborate, pilot, and be flexible.
Own what you know, but have an open mind when it is time to think outside the box and address challenges that might arise.
Always search for a win-win scenario, which is sometimes in less expected places but still a great opportunity.
Continuing the Pursuit of Patient-Centric Research
At Duke, one of our research mantras is “moving science further, much faster and with greater purpose.” This work is a unique blend of existing clinical knowledge and rapidly developing science.
We are in the unique situation of working with a captive patient audience, a fully engaged health care team and some of the best clinical researchers in the country. We plan to continue exploring and refining this new patient-centered care delivery model for transplant patients in the future.
We were one of the first centers in the country to move the transplant experience out of hospital, so it only makes sense we’d lead the way and build on that experience to create a truly patient-centered experience at home.
As a result of the work done, we recently secured significant funding from a National Institutes of Health grant to study this patient-centric model of care delivery in the transplant population. In the next phase of this work, we are randomizing patients undergoing an allogeneic stem cell transplant to either live at home and come to our clinic for treatment, or live at home and be treated at home.
This expanded trial will carefully capture the experience of the patient and their identified caregiver. We are very excited about what the next five years will hold for this work and the transformational impact it will have on the larger transplant community across the country.
Nelson Chao is a professor at Duke University and a researcher for Gateway for Cancer Research.