Primary healthcare needs and service utilisation of people with disability: a data linkage protocol

Abstract

IntroductionGeneral practitioners (GPs) play a crucial role in the early management and treatment of the comorbidities and complications experienced by people with disability. However, GPs experience multiple constraints, including limited time and disability-related expertise. Knowledge gaps around the health needs of people with disability as well as the frequency and extent of their engagement with GPs mean evidence to inform practice is limited. Using a linked dataset, this project aims to enhance the knowledge of the GP workforce by describing the health needs of people with disability.Methods and analysisThis project is a retrospective cohort study using general practice health records from the eastern Melbourne region in Victoria, Australia. The research uses Eastern Melbourne Primary Health Network (EMPHN)-owned de-identified primary care data from Outcome Health’s POpulation Level Analysis and Reporting Tool (POLAR). The EMPHN POLAR GP health records have been linked with National Disability Insurance Scheme (NDIS) data. Data analysis will involve comparisons across disability groups and the rest of the population to explore utilisation (eg, frequency of visits), clinical and preventative care (eg, cancer screening, blood pressure readings) and health needs (eg, health conditions, medications). Initial analyses will focus on NDIS participants as a whole and NDIS participants whose condition is either an acquired brain injury, stroke, spinal cord injury, multiple sclerosis or cerebral palsy, as classified by the NDIS.Ethics and disseminationEthics approval was obtained from the Eastern Health Human Research Ethics Committee (E20/001/58261), and approval for the general collection, storage and transfer of data was from the Royal Australian College of General Practitioners National Research Ethics and Evaluation Committee (protocol ID: 17-088). Dissemination mechanisms will include the engagement of stakeholders through reference groups and steering committees, as well as the production of research translation resources in parallel with peer-reviewed publications and conference presentations.

Determining the Impact of Opioid Policy on Substance Use and Mental Health–Related Harms: Protocol for a Data Linkage Study

“…This linkage process follows a method described in detail elsewhere [ 28 ]. When the linkage is complete, the linkage keys allow the matching of records across both the hospital and POLAR data.…”

“…Each linkage key is hashed and irreversible; that is, it cannot be used by the researcher to reidentify individuals or their data. This linkage process follows a method described in detail elsewhere [28]. When the linkage is complete, the linkage keys allow the matching of records across both the hospital and POLAR data.…”

Contributing causes of mortality and potentially avoidable deaths of people with intellectual or learning disability: A data‐linkage study

“…People with intellectual or learning disability also experience significant barriers to accessing preventative healthcare, health promotion and health services (Douglas et al, 2023;Reppermund et al, 2019;Trollor et al, 2018;Wigham et al, 2022), as well as barriers to receiving appropriate diagnoses and treatment (Heslop et al, 2013). This is likely due to a number of factors including low levels of medical practitioner knowledge and training in treating people with intellectual disability or learning disability, lack of reasonable adjustments and tailoring care to individual needs (Ramsey et al, 2022), difficulty communicating pain or other physical or psychological issues (McGuire & Kennedy, 2013;Mimmo et al, 2020), low health literacy (Nicholson et al, 2022) and other barriers such as reliance on others to attend appointments (Wigham et al, 2022).…”