Open Research Online The Open University’s repository of research publications and other research outputs Retrospective medical record research: Reflections of a unsponsored researcher. Journal Item How to cite: Bature, Fidelia; Vseteckova, Jitka; Pang, Dong; Pappas, Yannis and Guinn, Barbara (2019). Retrospective medical record research: Reflections of a unsponsored researcher. BJSTR Biomed J Sci & Tech Res, 21(4) pp. 16080–16086. For guidance on citations see FAQs. c 2019 Fidelia Bature https://creativecommons.org/licenses/by/4.0/ Version: Version of Record Link(s) to article on publisher’s website: http://dx.doi.org/doi:10.26717/BJSTR.2019.21.003642 Copyright and Moral Rights for the articles on this site are retained by the individual authors and/or other copyright owners. For more information on Open Research Online’s data policy on reuse of materials please consult the policies page. oro.open.ac.uk Review Article ISSN: 2574 -1241 DOI: 10.26717/BJSTR.2019.21.003642 Retrospective Medical Record Research: Reflections of A Unsponsored Researcher Fidelia Bature1,4*, Jitka Vsectekova2, Dong Pang3, Yannis Pappas3 and Barbara Guinn4 1Faculty of Health and Social Studies, School of Applied Social Studies, University of Bedfordshire, UK 2Faculty of Wellbeing, Education & Language Studies, School of Health, Wellbeing and Social Care, UK 3Institute for Health Research, Putteridge Bury Campus, University of Bedfordshire, UK 4Department of Biomedical Sciences, Faculty of Health Sciences, University of Hull, UK *Corresponding author: Fidelia Bature, Faculty of Health and Social Studies, School of Applied Social Studies, University of Bedfordshire, Luton, LU1 3JU, UK ARTICLE INFO Abstract Received: September 24, 2019 Published: October 01, 2019 of a doctoral thesis involving the analysis of primary care data. The aim of the study was to identifyThis article patterns is a reflective in signs and narrative symptoms by the preceding author following a clinical the diagnosis successful of Alzheimer’s completion Disease (AD). Here, we discuss the challenges of conducting research using the patient Citation: Fidelia B, Jitka V, Dong P, medical health records as a non-sponsored researcher. The narrative explores the Yannis P, Barbara G. Retrospective experiences of undertaking practice recruitment, issues that arose around access to data and the requirement for stakeholder commitment, with proposals for other similar of A Unsponsored Researcher. Biomed JMedical Sci & TechRecord Res Research: 21(4)-2019. Reflections BJSTR. cycle was adopted in this narrative. This model encourages a clear description of events, MS.ID.003642. analysisprojects ofthat personal attempt feelings, to undertake evaluation research of the using experience, patients’ conclusions data. The as Gibbs to the reflective options that were considered and actions to take if faced with the same study methods (involving Abbreviations: AD: Alzheimer’s primary care practitioners and/or the review of patient records). It also allows a Disease; CCG: Clinical Commissioning Group; CPRD: Clinical Practice Research undertaking a retrospective medical record research. The researcher also proposes Database; CRN: Clinical Research somestructured recommendation(s) reflection while to simultaneouslyovercoming barriers discussing to recruitment the barriers in primary and facilitators care. to Network; GP: general practitioner; MK: Milton Keynes; NIHR: National Institute Keywords: Retrospective Medical Record Review; Unsponsored Researcher; General for Health Research; REC: Research Ethics Committee; RMRR: Retrospective Aims medical record review; STEM: Science, Practice; Interview; Reflection Technology, Engineer and Mathematics care To review the difficulties faced when accessing patient medical records from primary by a non-sponsored researcher To recommend best practice that can help circumvent some of the difficulties faced Introduction symptoms preceding the clinical diagnosis of Alzheimer’s Disease Retrospective Medical Record Review (RMRR), that collates (AD), using a RMRR. General Practitioners (GPs) interpretation of patients’ personal AD is a condition that affects the cognitive and functional faced by an international student while undertaking a doctoral abilities of individuals. The disease is associated with stigmatisation experiences, can be challenging. This article presents the difficulties research project that was designed to encompass multiple GP [1,2] due to a lack of insight by patients and understanding by their practices and partners to ensure broad applicability. During this carers, the anticipation of the course of the disease, and general time, research was undertaken to identify patterns in the signs and public perceptions of AD [1,3]. The fear of a loss of independence Copyright@ Fidelia Bature | Biomed J Sci & Tech Res | BJSTR. MS.ID.003642. 16080 Volume 21- Issue 4 DOI: 10.26717/BJSTR.2019.21.003642 and particularly of becoming redundant can affect patients’ by the practices included limited human resources, managerial and psychologically and appears to be the main reason that the reporting of memory loss does not happen in a timely manner [1]. incentives that the researcher could offer to practices. gatekeeper issues, as well as the lack of financial compensation/ While all research presents consequences of some kind, RMRR Recruitment of practices could be challenging and slowed down is increasingly being used to identify issues regarding health and the progress of research to the extent that it could ultimately lead to disease [4] but is sensitive in nature. This is because it comes the termination of the study; however, in this research, it did slow down the progress and extended the time of completion. The issues regarding ethics and stigma, as presented in most diseases but faced could be overcome by extending the original proposed time; with (potential) ramifications especially when dealing with issues especially those involving cognitive decline such as AD [1]. Medical records present the opportunity to undertake studies without the cost of the research, each of which could present an enormous reducing the power of generalization and the inflation of the overall time-consuming process of recruiting individuals for longitudinal challenge to a unsponsored researcher [8] and could have ethical for refusal. It has been estimated that less than one-third of primary studies; it can reduce the financial burden of a real-time study. implications in and of itself especially when there is no justification taking and present ethics committees with concerns around the care studies successfully recruit health care practices within the However, they are limited in their content, influenced by GP record invasion of privacy, the security of information and the integrity of originally proposed time-frame in the UK [9]; the success becomes the representation of patients’ data [5,6]. less with an unsponsored researcher as indicated in this research. Even when the research team is made of a number of researchers, There is a risk that the review of medical records could identify other potentially sensitive health conditions [7] and patients are ideas being translated to solutions, while the need to base actions often not consented in anticipation of a researchers’ review of there is difficulty in practice recruitment [10], which may hinder on researched evidence continues. their medical records. The RMRR study was undertaken to meet the requirement of a longitudinal study in this research while Being a self-funded PhD student, and in some senses a lone recognizing the challenges associated with it. Several ethical and researcher, comes with its rewards. It is a time of great interest and methodological issues were observed during this study including unhindered by considerations of a team of data collectors. There is sober reflection and offers the opportunity to climb to great heights often comes via practice managers who often act as primary care also the tendency for long and detailed investigations in order to the difficulties of recruiting GPs because accessibility to them gatekeepers. Other challenges included time constraints on GPs, a be precise and not to miss any opportunity, made much harder by lack of resources and on occasion, a lack of cooperation by practice working alone because of the time taken to collect the same amount of data. The isolation can make it easier for the lone researcher to quit the game entirely, especially where slow progress prevents the managers that appeared to conflict with the GPs own willingness These factors impact negatively on all research. Despite unlimited collection of enough data for analysis within time constraints. The to participate. There were also issues of financial incentives. enthusiasm by the researcher and a willingness to continue to early part of the PhD researchers’ career is also a point recognised pursue leads of recruiting GP practices in two regions, very few of as the creative and energetic part of the researcher’s research those who initially seemed keen to help, ultimately engaged with journey [11]. This can be enhanced with adequate support from the research. Discussing such challenges openly will enable a wider the PhD researchers’ supervisors as well as the wider community discussion around methodological approaches to research such where the researcher hopes to engage. as RMRR and the possibility of undertaking sensitive research However, little attention has been given to self-funding, often differently