Dataset Information

Patient perspectives on use of electronic health records for research recruitment.

ABSTRACT:

Background

EHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients' willingness to participate.

Methods

We conducted 15 focus groups (n =?110 participants) in four counties in diverse regions of the southeastern US: Appalachia, the Mississippi Delta, and the Piedmont area of North Carolina. Based on a hypothetical study of a behavioral intervention for type 2 diabetes, we asked about the acceptability and appropriateness of direct investigator versus physician-mediated contact with patients for research recruitment, and whether patients should be asked to opt in or opt out of further contact in response to recruitment letters.

Results

For initial contact, nearly all participants said it would be acceptable for researchers to contact patients directly and three-fourths said that it would be acceptable for researchers to contact patients through their physicians. When we asked which would be most appropriate, a substantial majority chose direct contact. Themes that arose in the discussion included trust and transparency, decision-making power, the effect on research, and the effect on patient care. For response expectations, the vast majority of participants said both opt-in and opt-out would be acceptable-typically finding neither especially problematic and noting that both afford patients the opportunity to make their own decisions.

Conclusions

External validity relies heavily on researchers' success enrolling eligible patients and failure to reach accrual targets is a costly and common barrier to advancing scientific knowledge. Our results suggest that patients recognize multiple advantages and disadvantages of different research recruitment strategies and place value on the implications not just for themselves, but also for researchers and healthcare providers. Our findings, including rich qualitative detail, contribute to the body of empirical and ethical literature on improving research recruitment and suggest specific ways forward as well as important areas for future research.

SUBMITTER: Beskow LM

PROVIDER: S-EPMC6390331 | biostudies-literature | 2019 Feb

REPOSITORIES: biostudies-literature

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Publications

Patient perspectives on use of electronic health records for research recruitment.

Beskow Laura M LM Brelsford Kathleen M KM Hammack Catherine M CM

BMC medical research methodology 20190226 1

<h4>Background</h4>EHR phenotyping offers the ability to rapidly assemble a precisely defined cohort of patients prescreened for eligibility to participate in health-related research. Even so, stakeholders in the process must still contend with the practical and ethical challenges associated with research recruitment. Patient perspectives on these matters are particularly important given that the success of research recruitment depends on patients' willingness to participate.<h4>Methods</h4>We c ...[more]

PMID: 30808279

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Project description:BackgroundParticipant recruitment, especially for frail, elderly, hospitalized patients, remains one of the greatest challenges for many research groups. Traditional recruitment methods such as chart reviews are often inefficient, low-yielding, time consuming, and expensive. Best Practice Alert (BPA) systems have previously been used to improve clinical care and inform provider decision making, but the system has not been widely used in the setting of clinical research.ObjectiveThe primary objective of this quality-improvement initiative was to develop, implement, and refine a silent Best Practice Alert (sBPA) system that could maximize recruitment efficiency.MethodsThe captured duration of the screening sessions for both methods combined with the allotted research coordinator hours in the Emerald-COPD (chronic obstructive pulmonary disease) study budget enabled research coordinators to estimate the cost-efficiency.ResultsPrior to implementation, the sBPA system underwent three primary stages of development. Ultimately, the final iteration produced a system that provided similar results as the manual Epic Reporting Workbench method of screening. A total of 559 potential participants who met the basic prescreen criteria were identified through the two screening methods. Of those, 418 potential participants were identified by both methods simultaneously, 99 were identified only by the Epic Reporting Workbench Method, and 42 were identified only by the sBPA method. Of those identified by the Epic Reporting Workbench, only 12 (of 99, 12.12%) were considered eligible. Of those identified by the sBPA method, 30 (of 42, 71.43%) were considered eligible. Using a side-by-side comparison of the sBPA and the traditional Epic Reporting Workbench method of screening, the sBPA screening method was shown to be approximately four times faster than our previous screening method and estimated a projected 442.5 hours saved over the duration of the study. Additionally, since implementation, the sBPA system identified the equivalent of three additional potential participants per week.ConclusionsAutomation of the recruitment process allowed us to identify potential participants in real time and find more potential participants who meet basic eligibility criteria. sBPA screening is a considerably faster method that allows for more efficient use of resources. This innovative and instrumental functionality can be modified to the needs of other research studies aiming to use the electronic medical records system for participant recruitment.

Project description:ObjectivesTo develop a new model for patient recruitment that harnessed the full potential of Electronic Health Records (EHRs). Gaining access to potential participants' health records to assess their eligibility for studies and allow an approach about participation ('consent for contact') is ethically, legally and technically challenging, given that medical data are usually restricted to the patient's clinical team. The research objective was to design a model for identification and recruitment to overcome some of these challenges as well as reduce the burdensome (and/or time consuming) gatekeeper role of clinicians in determining who is appropriate or not to participate in clinical research.SettingLarge secondary mental health services context, UK.Participants2106 patients approached for 'consent for contact'. All patients in different services within the mental health trust are gradually and systematically being approached by a member of the clinical care team using the 'consent for contact' model. There are no exclusion criteria.Primary and secondary outcome measuresProvision of 'consent for contact'.ResultsA new model (the South London and Maudsley NHS Trust Consent for Contact model (SLaM C4C)) for gaining patients' consent to contact them about research possibilities, which is built around a de-identified EHR database. The model allows researchers to contact potential participants directly. Of 2106 patients approached by 25 October 2013, nearly 3 of every 4 gave consent for contact (1560 patients; 74.1%).ConclusionsThe SLaM C4C model offers an effective way of expediting recruitment into health research through using EHRs. It reduces the gatekeeper function of clinicians; gives patients greater autonomy in decisions to participate in research; and accelerates the development of a culture of active research participation. More research is needed to assess how many of those giving consent for contact subsequently consent to participate in particular research studies.

Project description:The objective was to compare case ascertainment, agreement, validity, and missing values for clinical research data obtained, processed, and linked electronically from electronic health records (EHR) compared to "manual" data processing and record abstraction in a cohort of out-of-hospital trauma patients.? This was a secondary analysis of two sets of data collected for a prospective, population-based, out-of-hospital trauma cohort evaluated by 10 emergency medical services (EMS) agencies transporting to 16 hospitals, from January 1, 2006, through October 2, 2007. Eighteen clinical, operational, procedural, and outcome variables were collected and processed separately and independently using two parallel data processing strategies by personnel blinded to patients in the other group. The electronic approach included EHR data exports from EMS agencies, reformatting, and probabilistic linkage to outcomes from local trauma registries and state discharge databases. The manual data processing approach included chart matching, data abstraction, and data entry by a trained abstractor. Descriptive statistics, measures of agreement, and validity were used to compare the two approaches to data processing.? During the 21-month period, 418 patients underwent both data processing methods and formed the primary cohort. Agreement was good to excellent (kappa = 0.76 to 0.97; intraclass correlation coefficient [ICC] = 0.49 to 0.97), with exact agreement in 67% to 99% of cases and a median difference of zero for all continuous and ordinal variables. The proportions of missing out-of-hospital values were similar between the two approaches, although electronic processing generated more missing outcomes (87 of 418, 21%, 95% confidence interval [CI] = 17% to 25%) than the manual approach (11 of 418, 3%, 95% CI = 1% to 5%). Case ascertainment of eligible injured patients was greater using electronic methods (n = 3,008) compared to manual methods (n = 629).? In this sample of out-of-hospital trauma patients, an all-electronic data processing strategy identified more patients and generated values with good agreement and validity compared to traditional data collection and processing methods.

Dataset Information

Patient perspectives on use of electronic health records for research recruitment.

Background

Methods

Results

Conclusions

Publications

Patient perspectives on use of electronic health records for research recruitment.

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