HAMPTON, Va., Feb. 26, 2025 /PRNewswire/ -- With cancer diagnoses and death rates in Michigan often higher than the national average, a new, patient-centered collaboration between Patient Advocate Foundation (PAF)'s Patient Insight Institute, the Michigan Oncology Quality Consortium ( MOQC ) and Gilead Sciences, Inc, aims to improve screening measures and generate better outcomes for the Great Lakes State.
The project goal is deceptively simple: Understand how to best screen patients for aspects of their environment that could affect their health outcomes. Modern research acknowledges the dramatic effect that SDOH can have on outcomes, but current screening methodologies have never been developed by patients, and often fail to prioritize human interaction, communication and trust.
The project will work within MOQC's existing network of oncology centers to develop a patient-centered screening protocol to screen for financial and health-related social needs and then plan to implement that protocol through demonstration sites. The project will connect patients to resources that meet their immediate needs, and lead to increased treatment adherence and better health and quality of life outcomes for patients.
"Screening, identification and intervention against social and financial needs can't happen as a sidebar to medical care," said Alan Balch, PhD, chief executive officer of the Patient Advocate Foundation.
"Our ultimate goal with this project is to develop a blueprint for how healthcare can better meet patients' needs that go beyond direct medical care but are critical for health and healing. Too often we forget to ask patients what they want and need. Because PAF is leading this project, patients will be building a model of care with the community-based services, providers and clinics," said Rebekah Angove, PhD, PAF executive vice president of research and evaluation.
"For quite some time MOQC's Patient and Caregiver Oncology Quality Council (POQC) has been concerned about financial toxicity and the effects of social determinants of health on cancer patients and their caregivers. With this opportunity we are excited to evoke the expertise of patients, caregivers, and the oncology practices that work with patients and caregivers every day. Only with these voices will we be able to create the kind of screening that uncovers crucial needs that patients encounter during their cancer journeys," said Keli DeVries, LMSW, MOQC program manager.
"The oncology practices we plan to collaborate with on this project have been unequivocally enthusiastic about participating. Not only will their insights inform our approach and solutions, but also help these practices advocate for more resources and support within their healthcare systems," said Natalia Simon, MBA, MA, MOQC senior project manager.
The project will initially focus on Michigan's small- to medium-sized oncology practices that serve low-income and under-resourced populations. These practices sometimes struggle to provide robust screening and interventions for health-related social needs.
The partnership, led by PAF's Patient Insight Institute, will incorporate patients' perspectives into every step of the project, from data collection to review. Because of this iterative and inclusive process, practices will have a patient-developed protocol that can be customized based on the clinics' (and patients') unique needs and workflows.
Ultimately, the project will identify best practices to scale to other clinics and geographies to advance health equity efforts at the clinic level and better meet all patients' needs. Together, this unique partnership will capture perspectives across the entire healthcare eco-system to co-create solutions that are informed by, and will work for, everyone.
This is a collaborative project with support from Gilead Sciences, Inc, represented by the Patient-Focused Implementation Science team.
Patient Advocate Foundation's Patient Insight Institute
Built on Patient Advocate Foundation's 25-year history of service, PAF's Patient Insight Institute was launched to foster patient engagement in research and lead collaborative evidence generation informed by the whole patient experience that is essential in promoting person-centered healthcare change initiatives. Actionable investigation topics include patient experiences in access to healthcare, the impact of cost of care on treatment choices and care goals, what happens to low income/ under-resourced patients because of their barriers to care, and other topics of interest to these patient communities. The Institute's leadership partners with academic, research, healthcare, and policy stakeholders in developing, implementing, and disseminating research projects that integrate patient and caregiver perspectives (our "Experts by Experience") throughout the research process. Importantly, our person-centered approach prioritizes opportunities to give voice to those who have been historically under-represented. Through PAF's Patient Insight Institute we can tap into a national network of patients of over 10,000 strong and can gather data via survey, as well as recruit for listening sessions, interviews, and focus groups.
Michigan Oncology Quality Consortium
The Michigan Oncology Quality Consortium (MOQC) is a statewide collaborative quality initiative whose members include 55 participating practices at 97 sites, including 39 medical oncology practices at 75 sites and 16 gynecology oncology practices at 22 sites (over 85% of oncology practices in Michigan). They currently have the infrastructure and track record of data collection, audit and feedback, data sharing, benchmarking, and sharing of best practices among oncology providers across the state. They provide practice-level data that we compare with other practices in the state and with national data. MOQC has a track record of improving performance across meaningful measures that matter to patients, caregivers, practices, and policy makers.
MOQC practices face numerous challenges in meeting the needs of their patients. In particular, patients in rural areas are profoundly underserved, often traveling over 10 hours each way to receive care. Access to broadband is minimal in rural areas. Many of our practices also serve the urban poor. Most of these practices have fewer than six oncologists and do not have access to social workers, financial navigators, palliative care providers, and other important patient services. We know from our Patient and Caregiver Oncology Quality Council (POQC) that issues such as lack of access to transportation, inability to afford medications for the treatment of both cancer and other chronic conditions and not having access to high-quality information support are all salient issues faced by patients and caregivers in our state.
Contact:
Caitlin Donovan, Patient Advocate Foundation
Caitlin.Donovan@patientadvocate.org
(202) 465-5113
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SOURCE Patient Advocate Foundation
