Conducting Research on the Internet: Medical Record Data Integration with Patient-Reported Outcomes

Cascade, Elisa; Marr, P.; Winslow, Matthew P.; Burgess, Andrew R.; Nixon, M.

doi:10.2196/jmir.2202

Cited by 20 publications

(11 citation statements)

References 4 publications

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“…The introduction of Internet-based information technology (IT) into the health care system is widely perceived as a significant step to improve the quality of services provided by health care institutions [ 1 - 5 ]. As a result, transition of paper medical records to electronic ones is becoming more common in health care systems around the globe [ 6 - 9 ].…”

Section: Introductionmentioning

confidence: 99%

Factors Associated With Adoption of the Electronic Health Record System Among Primary Care Physicians

Cheung¹,

Tong²,

Cheung³

et al. 2013

JMIR Med Inform

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BackgroundA territory-wide Internet-based electronic patient record allows better patient care in different sectors. The engagement of private physicians is one of the major facilitators for implementation, but there is limited information about the current adoption level of electronic medical record (eMR) among private primary care physicians.ObjectiveThis survey measured the adoption level, enabling factors, and hindering factors of eMR, among private physicians in Hong Kong. It also evaluated the key functions and the popularity of electronic systems and vendors used by these private practitioners.MethodsA central registry consisting of 4324 private practitioners was set up. Invitations for self-administered surveys and the completed questionnaires were sent and returned via fax, email, postal mail, and on-site clinic visits. Current users and non-users of eMR system were compared according to their demographic and practice characteristics. Student’s t tests and chi-square tests were used for continuous and categorical variables, respectively.ResultsA total of 524 completed surveys (response rate 524/4405 11.90%) were collected. The proportion of using eMR in private clinics was 79.6% (417/524). When compared with non-users, the eMR users were younger (users: 48.4 years SD 10.6 years vs non-users: 61.7 years SD 10.2 years, P<.001); more were female physicians (users: 80/417, 19.2% vs non-users: 14/107, 13.1%, P=.013); possessed less clinical experience (with more than20 years of practice: users: 261/417, 62.6% vs non-user: 93/107, 86.9%, P<.001); fewer worked under a Health Maintenance Organization (users: 347/417, 83.2% vs non-users: 97/107, 90.7%, P<.001) and more worked with practice partners (users: 126/417, 30.2% vs non-users: 4/107, 3.7%, P<.001). Efficiency (379/417, 90.9%) and reduction of medical errors (229/417, 54.9%) were the major enabling factors, while patient-unfriendliness (58/107, 54.2%) and limited consultation time (54/107, 50.5%) were the most commonly reported hindering factors. The key functions of computer software among eMR users consisted of electronic patient registration system (376/417, 90.2%), drug dispensing system (328/417, 78.7%) and electronic drug labels (296/417, 71.0%). SoftLink Clinic Solution was the most popular vendor (160/417, 38.4%).ConclusionsThese findings identified several physician groups who should be targeted for more assistance on eMR installation and its adoption. Future studies should address the barriers of using Internet-based eMR to enhance its adoption.

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Section: Introductionmentioning

confidence: 99%

Factors Associated With Adoption of the Electronic Health Record System Among Primary Care Physicians

Cheung¹,

Tong²,

Cheung³

et al. 2013

JMIR Med Inform

View full text Add to dashboard Cite

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“…There are concerns over patient privacy and the need for computer literacy, which may affect generalisability of any research findings . Study retention is considered to be higher where there is direct patient interaction because of the explicit alignment of patient incentives; the patient learns about the study directly, understands what is required, self‐consents to participate, and then self‐reports study information . Jamison et al found better rates of compliance with electronic patient reported outcomes (PROs) than paper based PROs.…”

Section: Resultsmentioning

confidence: 99%

Electronic case report forms and electronic data capture within clinical trials and pharmacoepidemiology

Rorie

Flynn

Grieve

et al. 2017

Brit J Clinical Pharma

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AimsResearchers in clinical and pharmacoepidemiology fields have adopted information technology (IT) and electronic data capture, but these remain underused despite the benefits. This review discusses electronic case report forms and electronic data capture, specifically within pharmacoepidemiology and clinical research.MethodsThe review used PubMed and the Institute of Electrical and Electronic Engineers library. Search terms used were agreed by the authors and documented. PubMed is medical and health based, whereas Institute of Electrical and Electronic Engineers is technology based. The review focuses on electronic case report forms and electronic data capture, but briefly considers other relevant topics; consent, ethics and security.ResultsThere were 1126 papers found using the search terms. Manual filtering and reviewing of abstracts further condensed this number to 136 relevant manuscripts. The papers were further categorized: 17 contained study data; 40 observational data; 27 anecdotal data; 47 covering methodology or design of systems; one case study; one literature review; two feasibility studies; and one cost analysis.ConclusionElectronic case report forms, electronic data capture and IT in general are viewed with enthusiasm and are seen as a cost‐effective means of improving research efficiency, educating participants and improving trial recruitment, provided concerns about how data will be protected from misuse can be addressed. Clear operational guidelines and best practises are key for healthcare providers, and researchers adopting IT, and further work is needed on improving integration of new technologies with current systems. A robust method of evaluation for technical innovation is required.

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“…When expanding the linkage methodology to include databases such as electronic medical records [ 26 ], it is important to take the privacy aspect into account. It has been strongly argued that important privacy concerns must be interpreted alongside the social good that can come from this kind of health research [ 27 - 30 ].…”

Section: Discussionmentioning

confidence: 99%

Linked Patient-Reported Outcomes Data From Patients With Multiple Sclerosis Recruited on an Open Internet Platform to Health Care Claims Databases Identifies a Representative Population for Real-Life Data Analysis in Multiple Sclerosis

Risson¹,

Ghodge²,

Bonzani³

et al. 2016

J Med Internet Res

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BackgroundAn enormous amount of information relevant to public health is being generated directly by online communities.ObjectiveTo explore the feasibility of creating a dataset that links patient-reported outcomes data, from a Web-based survey of US patients with multiple sclerosis (MS) recruited on open Internet platforms, to health care utilization information from health care claims databases. The dataset was generated by linkage analysis to a broader MS population in the United States using both pharmacy and medical claims data sources.MethodsUS Facebook users with an interest in MS were alerted to a patient-reported survey by targeted advertisements. Eligibility criteria were diagnosis of MS by a specialist (primary progressive, relapsing-remitting, or secondary progressive), ≥12-month history of disease, age 18-65 years, and commercial health insurance. Participants completed a questionnaire including data on demographic and disease characteristics, current and earlier therapies, relapses, disability, health-related quality of life, and employment status and productivity. A unique anonymous profile was generated for each survey respondent. Each anonymous profile was linked to a number of medical and pharmacy claims datasets in the United States. Linkage rates were assessed and survey respondents’ representativeness was evaluated based on differences in the distribution of characteristics between the linked survey population and the general MS population in the claims databases.ResultsThe advertisement was placed on 1,063,973 Facebook users’ pages generating 68,674 clicks, 3719 survey attempts, and 651 successfully completed surveys, of which 440 could be linked to any of the claims databases for 2014 or 2015 (67.6% linkage rate). Overall, no significant differences were found between patients who were linked and not linked for educational status, ethnicity, current or prior disease-modifying therapy (DMT) treatment, or presence of a relapse in the last 12 months. The frequencies of the most common MS symptoms did not differ significantly between linked patients and the general MS population in the databases. Linked patients were slightly younger and less likely to be men than those who were not linkable.ConclusionsLinking patient-reported outcomes data, from a Web-based survey of US patients with MS recruited on open Internet platforms, to health care utilization information from claims databases may enable rapid generation of a large population of representative patients with MS suitable for outcomes analysis.

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Conducting Research on the Internet: Medical Record Data Integration with Patient-Reported Outcomes

Cited by 20 publications

References 4 publications

Factors Associated With Adoption of the Electronic Health Record System Among Primary Care Physicians

Factors Associated With Adoption of the Electronic Health Record System Among Primary Care Physicians

Electronic case report forms and electronic data capture within clinical trials and pharmacoepidemiology

Linked Patient-Reported Outcomes Data From Patients With Multiple Sclerosis Recruited on an Open Internet Platform to Health Care Claims Databases Identifies a Representative Population for Real-Life Data Analysis in Multiple Sclerosis

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