A UMass Medical School leader in survey research is making a difference in the lives of the underserved by answering questions that will lead to health care improvements for cancer patients and those receiving long-term and end-of-life care.
“My area of interest has always been in vulnerable and underserved populations. I really value what I call real-world research. Massachusetts has been on the leading edge of that real-world, practical research where you feel you can make a difference in people’s lives,” said Melissa Clark, PhD, senior director of Research and Evaluation, part of the Center for Health Policy and Research, a unit within UMass Medical School’s Commonwealth Medicine division. Clark also is a professor in Quantitative Health Sciences at UMass Medical School.
Clark led survey research as associate director of the Center for Population Health and Clinical Epidemiology at Brown University before joining UMass Medical School a year ago. She has built a national reputation as a survey researcher and brought 12 research projects with her when she assumed her position in Research and Evaluation.
Commonwealth Medicine is well-known for its expertise in claims analysis and Clark is working to increase the visibility of its work in other areas.
“I’ve been building the Research and Evaluation unit to have three areas of expertise – quantitative analysis, mixed methods and surveys,” Clark said.
One of the reasons Clark decided to join Commonwealth Medicine was the opportunity to collaborate with Bittie Behl-Chadha, PhD, director of the Office of Survey Research, and her team. Clark is working closely with the team on several projects.
One of those projects – a study of the quality of life of colorectal cancer survivors and their caregivers – is being done in partnership with the Boston University School of Public Health. The researchers are studying whether disparities related to sexual orientation affect health care and the quality of life for colorectal cancer survivors.
Research and Evaluation and the Office of Survey Research also have teamed with Brown University on a study of culture change in nursing homes. This is a follow-up to a project initiated in the mid-2000s titled Shaping Long-Term Care in America and funded by the National Institute on Aging. In the initial project, the team interviewed more than 2,000 nursing home administrators and 2,000 directors of nursing at nursing homes nationwide to study how state policies and the market affect long-term care. In the current project, the research team is re-contacting the nursing home administrators to understand the extent to which facilities have adopted culture change and resident-centered care practices and how this adoption has affected the quality of life and care received by residents in those facilities.
The teams collaborated on a project for Four Seasons Compassion for Life, a nonprofit organization in North Carolina that provides palliative and inpatient hospice care. Clark’s team and the Office of Survey Research are helping Four Seasons with an evaluation of their program by examining the satisfaction and experiences of caregivers of patients who died with their services.
The Patient-Centered Outcomes Research Institute (PCOR) awarded a grant to Women & Infants Hospital of Rhode Island, the University of Alabama at Birmingham, and Clark for a study of stress urinary incontinence in women with endometrial cancer. The research is comparing the quality of life among women with both endometrial cancer and stress urinary incontinence (SUI) that choose to have their SUI treated at the same time as their endometrial cancer surgery to women that do not have concurrent surgery.
“It has the potential of changing the standard of care for women with uterine cancer who also have stress incontinence,” Clark said.
Clark’s work in end-of-life care has personal and professional meaning for her. Clark recently designed a survey on end-of-life care in collaboration with the Massachusetts Coalition for Serious Illness Care that was conducted by survey research firm SSRS. Clark and Stephen Kurtz, MS, a Research and Evaluation biostatistician, analyzed the data and prepared a report released in May that found doctors and patients are not prepared for end-of-life care. A follow-up survey is planned for next year.
Clark became interested in end-of-life care when one of her closest friends was diagnosed with stage 4 uterine cancer and was treated with an aggressive form of chemotherapy. Clark and other friends took turns being with her during the chemotherapy treatments and supporting her. Then in 2015, Clark’s mother died after becoming ill and needing hospice care.
“The end-of-life projects have been very meaningful work because I think of my friend often, and now my mom, in the papers I write and the dissemination that I do,” Clark said.