Amanda L. Terry

Using your electronic medical record for research: a primer for avoiding pitfalls

In Canada, use of electronic medical records (EMRs) among primary health care (PHC) providers is relatively low. However, it appears that EMRs will eventually become more ubiquitous in PHC. This represents an important development in the use of health care information technology as well as a potential new source of PHC data for research. However, care in the use of EMR data is required. Four years ago, researchers at the Centre for Studies in Family Medicine, The University of Western Ontario created an EMR-based research project, called Deliver Primary Health Care Information. Implementing this project led us to two conclusions about using PHC EMR data for research: first, additional time is required for providers to undertake EMR training and to standardize the way data are entered into the EMR and second, EMRs are designed for clinical care, not research. Based on these experiences, we offer our thoughts about how EMRs may, nonetheless, be used for research. Family physician researchers who intend to use EMR data to answer timely questions relevant to practice should evaluate the possible impact of the four questions raised by this paper: (i) why are EMR data different?; (ii) how do you extract data from an EMR?; (iii) where are the data stored? and (iv) what is the data quality? In addition, consideration needs to be given to the complexity of the research question since this can have an impact on how easily issues of using EMR data for research can be overcome.

Examining the Prevalence and Patterns of Multimorbidity in Canadian Primary Healthcare: A Methodologic Protocol using a National Electronic Medical Record Database:

In many developed countries, the burden of disease has shifted from acute to long-term or chronic diseases – producing new and broader challenges for patients, healthcare providers, and healthcare systems. Multimorbidity, the coexistence of two or more chronic diseases within an individual, is recognized as a significant public health and research priority. This protocol aims to examine the prevalence, characteristics, and changing burden of multimorbidity among adult primary healthcare (PHC) patients using electronic medical record (EMR) data. The objectives are two-fold: (1) to measure the point prevalence and clusters of multimorbidity among adult PHC patients; and (2) to examine the natural history and changing burden of multimorbidity over time among adult PHC patients. Data will be derived from the Canadian Primary Care Sentinel Surveillance Network (CPCSSN). The CPCSSN database contains longitudinal, point-of-care data from EMRs across Canada. To identify adult patients with multimorbidity, a list of 20 chronic disease categories (and corresponding ICD-9 codes) will be used. A computational cluster analysis will be conducted using a customized computer program written in JAVA. A Cox proportional hazards analysis will be used to model time-to-event data, while simultaneously adjusting for provider- and patient-level predictors. All analyses will be conducted using STATA SE 13.1. This research is the first of its kind using a pan-Canadian EMR database, which will provide an opportunity to contribute to the international evidence base. Future work should systematically compare international research using similar robust methodologies to determine international and geographical variations in the epidemiology of multimorbidity.

Does Informatics Enable or Inhibit the Delivery of Patient-centred, Coordinated, and Quality-assured Care: a Delphi Study. A Contribution of the IMIA Primary Health Care Informatics Working Group.

BACKGROUND Primary care delivers patient-centred and coordinated care, which should be quality-assured. Much of family practice now routinely uses computerised medical record (CMR) systems, these systems being linked at varying levels to laboratories and other care providers. CMR systems have the potential to support care. OBJECTIVE To achieve a consensus among an international panel of health care professionals and informatics experts about the role of informatics in the delivery of patient-centred, coordinated, and quality-assured care. METHOD The consensus building exercise involved 20 individuals, five general practitioners and 15 informatics academics, members of the International Medical Informatics Association Primary Care Informatics Working Group. A thematic analysis of the literature was carried out according to the defined themes. RESULTS The first round of the analysis developed 27 statements on how the CMR, or any other information system, including paper-based medical records, supports care delivery. Round 2 aimed at achieving a consensus about the statements of round one. Round 3 stated that there was an agreement on informatics principles and structures that should be put in place. However, there was a disagreement about the processes involved in the implementation, and about the clinical interaction with the systems after the implementation. CONCLUSIONS The panel had a strong agreement about the core concepts and structures that should be put in place to support high quality care. However, this agreement evaporated over statements related to implementation. These findings reflect literature and personal experiences: whilst there is consensus about how informatics structures and processes support good quality care, implementation is difficult.

Interdisciplinary primary health care research training through TUTOR-PHC: the insiders' view.

Recent policy initiatives in Canada have highlighted the lack of research capacity among most disciplines involved in primary health care, resulting in a majority of clinical and health services research being conducted in secondary and tertiary care centers (Russell et al., 2007). At the same time, interprofessional care is increasingly being seen as a preferred approach to address the complex and wide-ranging clinical problems evident in primary health care. Interdisciplinary research training has therefore been proposed as a way to ensure that research evidence can address the complex interplay between biomedical, psychosocial and organizational dimensions of primary health care. The design of interdisciplinary research training programs requires close attention to the individual components and process factors that explain their long-term effectiveness (or lack of effectiveness) (Campbell et al., 2000). However, little has been reported on the process and influence of such programs. The goals of this paper are threefold: (i) to describe the Transdisciplinary Understanding and Training on Research in Primary Health Care (TUTOR-PHC) program, an interdisciplinary research training program; (ii) to identify content and process elements that were seen as key to its success; and (iii) to outline its influence on participants. As a cohort of trainees and mentor (with backgrounds in health administration, education, epidemiology, family medicine, nursing, physical therapy and psychology), we report on our experience of working together as an ‘‘interdisciplinary research team’’ throughout the program. We hope this paper will contribute to the knowledge base and design of effective interdisciplinary research training programs in the future, by providing participants’ views.

Implementing and Using a Patient Portal: A qualitative exploration of patient and provider perspectives on engaging patients

Background The use of portals might be expected to rise; however, adoption has been slow. Development of portals has occurred with limited patient involvement. This paper fills a need for literature concerning perspectives regarding the value of portals, how best to organize and provide portals and critically how to seek patient involvement in implementation. Objective The objective was to explore the feelings, ideas, and expectations of patients and primary care providers concerning the implementation and use of patient portals. Methods The study employed a descriptive qualitative design interviewing seven patients and four providers from an interdisciplinary primary health care clinic in Ontario, Canada. Patients were older with at least one chronic condition. Interviews were analysed independently by three coders who then met to synthesize the findings. Results There was limited experience of portals and substantial convergence between patients and providers regarding concerns and potential benefits with an overall positive view. Four themes emerged: 1) the context in which patient portal use takes place; 2) the necessary conditions for use of a patient portal; 3) the implementation of a patient portal and 4) the use of a patient portal for care. Conclusion Findings highlight that it is not sufficient to engage patients in the use of a portal; it is critical that patients be engaged in the early stages of implementation. With many health and fitness electronic tools available (e.g. Fitbit), this study reminds us that tools are not enough. Patient engagement requires patient-centred partnerships between patients and health care providers.

Defining dimensions of research readiness: a conceptual model for primary care research networks

BackgroundRecruitment to research studies in primary care is challenging despite widespread implementation of electronic patient record (EPR) systems which potentially make it easier to identify eligible cases.MethodsLiterature review and applying the learning from a European research readiness assessment tool, the TRANSFoRm International Research Readiness instrument (TIRRE), to the context of the English NHS in order to develop a model to assess a practice’s research readiness.ResultsSeven dimensions of research readiness were identified: (1) Data readiness: Is there good data quality in EPR systems; (2) Record readiness: Are EPR data able to identify eligible cases and other study data; (3) Organisational readiness: Are the health system and socio-cultural environment supportive; (4) Governance readiness: Does the study meet legal and local health system regulatory compliance; (5) Study-specific readiness; (6) Business process readiness: Are business processes tilted in favour of participation: including capacity and capability to take on extra work, financial incentives as well as intangibles such as social and intellectual capital; (7) Patient readiness: Are systems in place to recruit patients and obtain informed consent?ConclusionsThe model might enable the development of interventions to increase participation in primary care-based research and become a tool to measure the progress of practice networks towards the most advanced state of readiness.

Building a Privacy, Ethics, and Data Access Framework for Real World Computerised Medical Record System Data: A Delphi Study

BACKGROUND Privacy, ethics, and data access issues pose significant challenges to the timely delivery of health research. Whilst the fundamental drivers to ensure that data access is ethical and satisfies privacy requirements are similar, they are often dealt with in varying ways by different approval processes. OBJECTIVE To achieve a consensus across an international panel of health care and informatics professionals on an integrated set of privacy and ethics principles that could accelerate health data access in data-driven health research projects. METHOD A three-round consensus development process was used. In round one, we developed a baseline framework for privacy, ethics, and data access based on a review of existing literature in the health, informatics, and policy domains. This was further developed using a two-round Delphi consensus building process involving 20 experts who were members of the International Medical Informatics Association (IMIA) and European Federation of Medical Informatics (EFMI) Primary Health Care Informatics Working Groups. To achieve consensus we required an extended Delphi process. RESULTS The first round involved feedback on and development of the baseline framework. This consisted of four components: (1) ethical principles, (2) ethical guidance questions, (3) privacy and data access principles, and (4) privacy and data access guidance questions. Round two developed consensus in key areas of the revised framework, allowing the building of a newly, more detailed and descriptive framework. In the final round panel experts expressed their opinions, either as agreements or disagreements, on the ethics and privacy statements of the framework finding some of the previous round disagreements to be surprising in view of established ethical principles. CONCLUSION This study develops a framework for an integrated approach to ethics and privacy. Privacy breech risk should not be considered in isolation but instead balanced by potential ethical benefit.

Towards optimal electronic medical record use: perspectives of advanced users

Background While primary health care electronic medical record (EMR) adoption has increased in Canada, the use of advanced EMR features is limited. Realizing the potential benefits of primary health care EMR use is dependent not only on EMR acquisition, but also on its comprehensive use and integration into practice; yet, little is known about the advanced use of EMRs in primary health care. Objective To explore the views of advanced primary health care EMR users practising in a team-based environment. Methods A descriptive qualitative approach was used to explore the views of primary health care practitioners who were identified as advanced EMR users. Twelve individual semi-structured interviews were held with primary health care practitioners in Southwestern Ontario, Canada. Field notes were created after each interview. Interviews were audio recorded and transcribed verbatim. Researchers independently coded the transcripts and then met to discuss the results of the coding. We used a thematic approach to data analysis. Results Three themes emerged from the data analysis: advanced EMR users as individuals with signature characteristics, advanced EMR users as visionaries and advanced EMR users as agents of change. In any one participant, these elements could overlap, illuminating the important interplay between these themes. Taken together, these themes defined advanced use among this group of primary health care practitioners. Conclusions To realize the potential benefits of EMR use in improved patient care and outcomes, we need to understand how to support EMR use. This study provides a necessary building block in furthering this understanding.

Measuring Electronic Health Record Use in Primary Care: A Scoping Review

BACKGROUND Simple measures of electronic health record (EHR) adoption may be inadequate to evaluate EHR use; and positive outcomes associated with EHRs may be better gauged when varying degrees of EHR use are taken into account. In this article, we aim to assess the current state of the literature regarding measuring EHR use. OBJECTIVE This article conducts a scoping review of the literature to identify and classify measures of primary care EHR use with a focus on the Canadian context. METHODS We conducted a scoping review. Multiple citation databases were searched, as well as gray literature from relevant Web sites. Resulting abstracts were screened for inclusion. Included full texts were reviewed by two authors. Data from the articles were extracted; we synthesized the findings. Subsequently, we reviewed these results with seven EHR stakeholders in Canada. RESULTS Thirty-seven articles were included. Eighteen measured EHR function use individually, while 19 incorporated an overall level of use. Eight frameworks for characterizing overall EHR use were identified. CONCLUSION There is a need to create standardized frameworks for assessing EHR use.

The Multimorbidity Cluster Analysis Tool: Identifying Combinations and Permutations of Multiple Chronic Diseases Using a Record-Level Computational Analysis

Introduction Multimorbidity, or the co-occurrence of multiple chronic health conditions within an individual, is an increasingly dominant presence and burden in modern health care systems. To fully capture its complexity, further research is needed to uncover the patterns and consequences of these co-occurring health states. As such, the Multimorbidity Cluster Analysis Tool and the accompanying Multimorbidity Cluster Analysis Toolkit have been created to allow researchers to identify distinct clusters that exist within a sample of participants or patients living with multimorbidity. Development The tool and toolkit were developed at Western University in London, ON, Canada. This open-access computational program (JAVA code and executable file) was developed and tested to support an analysis of thousands of individual records and up to 100 disease diagnoses or categories. Application The computational program can be adapted to the methodological elements of a research project, including type of data, type of chronic disease reporting, measurement of multimorbidity, sample size and research setting. The computational program will identify all existing, and mutually exclusive, combinations and permutations within the dataset. An application of this computational program is provided as an example, in which more than 75,000 individual records and 20 chronic disease categories resulted in the detection of 10,411 unique combinations and 24,647 unique permutations among female and male patients. Discussion The tool and toolkit are now available for use by researchers interested in exploring the complexities of multimorbidity. Its careful use, and the comparison between results, will be valuable additions to the nuanced understanding of multimorbidity.