Feasibility of linking markers of dementia-related health in primary care medical records to cognitive function assessed in a specialist dementia service

Objectives To assess the feasibility of linking and comparing markers of dementia-related health recorded in primary care electronic health records (EHR) to assessments of cognitive function undertaken in a specialist dementia service. Methods One thousand patients in a UK secondary care specialist dementia service were invited to take part. Primary care EHR were requested from 72 general practices of consenting patients. Sixty-three previously established individual markers within 13 broader domains of dementia-related health were then extracted from primary care EHR and compared to cognitive assessments scores recorded in the dementia service EHR. Results 258 (26%) patients consented to take part. At least one cognitive assessment score was recorded for 242 (94%) patients, but primary and secondary care EHR records could only be linked in 93 patients. 56 of these 93 patients had two cognitive assessments scores at least 12 months apart. In the patients with data available for analysis individuals with a higher number of markers and domains recorded in their primary care records had lower mean cognitive assessment scores (range 1.6-2.1 points), and after adjustment for earlier cognitive scores (range 2.0-2.5 points), indicating poorer cognitive function, although differences were not statistically significant. Conclusion This feasibility study highlights the challenges in obtaining consent and linking primary and secondary care EHR in dementia, and in extracting cognitive function scores from dementia service EHR. ### Competing Interest Statement The authors have declared no competing interest. ### Funding Statement This work was supported by The Dunhill Medical Trust under Grant [RPGF 1711/11] as part of The MEasurement of Dementia DIsease progression in Primary care (MEDDIP) study. KPJ and CCG are also supported by matched funding awarded to the NIHR Applied Research Collaboration (West Midlands). The views and opinions expressed are those of the authors and not necessarily the views of The Dunhill Medical Trust, NHS, the NIHR or the Department of Health and Social Care. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: Ethical approval was obtained by the UK National Research Ethics Service, Wales 7 Committee (REC reference: 18/WA/0423). I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines and uploaded the relevant EQUATOR Network research reporting checklist(s) and other pertinent material as supplementary files, if applicable. Yes It is possible for external researchers to request access to the summarised (aggregated) data from this study through a formal data request process. Researchers wanting to apply to access the data from the School of Medicine, Keele University, should email medicine.datasharing@keele.ac.uk or contact the Principal Investigator of the study, Dr Michelle Marshall (m.marshall@keele.ac.uk), for further information.