Tumor Registry Electronic Medical Record Linked Data Resource: TREMR
The Tumor Registry Electronic Medical Record linked data resource (TREMR) will contain data from Maine Medical Center’s (MMC) electronic medical record on patients with cancer in the MMC Tumor Registry. It will also contain regional population density, household income, race/ethnicity, and data on distance from health care providers.
Investigators will use TREMR to generate evidence that informs cancer policies and interventions focused on:
Modifiable behaviors such as smoking, diet and physical activity, and cancer screening;
- Care quality and safety; and 3) Barriers to cancer care and disparities. The goals of the project are to build TREMR, establish governance that allows it to be used while protecting patient privacy, promote the vibrant use of TREMR among the community of cancer researchers, and define and carry out analyses that inform the policy objectives of the Maine Cancer Consortium.
Data from Maine Medical Center’s (MMC) Tumor Registry captures information about a large proportion of the state’s cancer patients and their initial course of therapy in great depth. Adherence to rigorous Commission on Cancer (CoC) accreditation standards ensures the excellent quality of the Registry’s data. However, the Registry does not capture detailed information on patient’s health behaviors, their medical history and the other medical care they receive. These additional data are frequently required for research on cancer prevention, early detection, care quality and outcomes data and are available in MMC’s electronic medical record (EMR). The Registry also lacks geographic information about population density, household income, race/ethnicity, and distance-from-care data that are vital to answering many questions about cancer policies and interventions.
In response to the Maine Cancer Foundation’s call for research infrastructure projects, we propose work to enable the efficient development of research datasets from MMC’s Registry, its EMR and regional geographic information. The infrastructure will be called the Tumor Registry Electronic Medical Record linked data resource (TREMR). TREMR will facilitate the generation of reliable evidence that informs cancer policies and interventions focused on:
- Modifiable behaviors such as smoking, diet and physical activity, and cancer screening;
- Care quality and safety;
- Barriers to cancer care, and disparities in health and health care
We will develop a governance structure that will enable any qualified researcher to use TREMR while protecting patient’s privacy. This will include the establishment of an executive committee to evaluate and approve requests to use TREMR, and an honest broker who will
create research datasets.
To promote the widespread use of TREMR by transdisciplinary research teams we will vigorously disseminate information about its scientific value and the process for accessing it through several channels including: a multi-institutional Population Health Research
group; faculties at the University of Southern Maine (USM), MMC’s Center for Outcomes Research and Evaluation (CORE), and the University of New England; MMCRI’s Research Navigation and Translational Catalyst Programs; MMC’s Population Health Committee;
the Maine Public Health Association; and clinician researchers in MMC’s Oncology Department and at New England Cancer Specialists.
We will ensure the impact of TREMR on cancer incidence and mortality by using it for two proof-of-principle analyses that will be specified in collaboration with The Maine Cancer Consortium’s Executive Committee. This work will be carried out after the data
development and linkage is complete. The analyses will be chosen to maximize their potential influence on the policy, prevention, and care improvement goals identified in the Consortium’s State of Maine Cancer Plan.
Specifically, our aims for the proposed work are:
- Aim 1. Create TREMR, a cancer research data resource that contains medical record and geographic data linkable to the Maine Medical Center Tumor Registry
Aim 2. Develop governance policies and procedures that enable any qualified researcher to use TREMR while protecting patient privacy
Aim 3. Vigorously promote the use of TREMR by cancer researchers
- Aim 4. Use TREMR to produce evidence that informs the policy objectives of the Maine Cancer Consortium