Electronic Data Collection Options for Practice-Based Research Networks

Abstract

PURPOSE We wanted to describe the potential benefi ts and problems associated with selected electronic methods of collecting data within practice-based research networks (PBRNs). METHODSWe considered a literature review, discussions with PBRN researchers, industry information, and personal experience. This article presents examples of selected PBRNs' use of electronic data collection. RESULTSCollecting research data in the geographically dispersed PBRN environment requires considerable coordination to ensure completeness, accuracy, and timely transmission of the data, as well as a limited burden on the participants. Electronic data collection, particularly at the point of care, offers some potential solutions. Electronic systems allow use of transparent decision algorithms and improved data entry and data integrity. These systems may improve data transfer to the central offi ce as well as tracking systems for monitoring study progress. PBRNs have available to them a wide variety of electronic data collection options, including notebook computers, tablet PCs, personal digital assistants (PDAs), and browser-based systems that operate independent of or over the Internet. Tablet PCs appear particularly advantageous for direct patient data collection in an offi ce environment. PDAs work well for collecting defi ned data elements at the point of care. Internet-based systems work well for data collection that can be completed after the patient visit, as most primary care offi ces do not support Internet connectivity in examination rooms.CONCLUSIONS When planning to collect data electronically, it is important to match the electronic data collection method to the study design. Focusing an inappropriate electronic data collection method onto users can interfere with accurate data gathering and may also anger PBRN members.

Information Technology in PBRNs: The Indiana University Medical Group Research Network (IUMG ResNet) Experience

“…Although PBRNs greatly vary with regards to personnel and technical capacity, our successful ap- 16,17 It is worth reiterating this key technical point: HL7 messages are used by most electronic registration systems and represent an opportunity for consistent and real-time data capture. Even in the absence of a fully functional EMR, simply tapping electronic registration messages can allow a centralized researcher with a list of eligible patients to identify these patients in follow-up.…”

In This Issue: Bursting the Bubble on Chronic Disease Management, the Meaning of Healing, PBRN Methods Supplement, and the Annals' 2-Year Anniversary

“…22 Pace and Staton describe the variety of strategies that may be used for electronic data collection, transfer, and management, and they underscore the importance of matching the technology to the specifi c requirements of the project. 23 van Weel reviews the importance of data collected for extended periods to primary care research and offers suggestions for accomplishing longitudinal data collection. 24 Wolf et al and Pace et al shine much needed light into the diffi cult issues faced by PBRNs in complying with requirements for protection of human subjects through IRBs 25 and protection of sensitive patient data through HIPAA regulations.…”

Stakeholder Engagement in a Patient-Reported Outcomes (PRO) Measure Implementation: A Report from the SAFTINet Practice-based Research Network (PBRN)

“…6,7,22,24,25 PRO Implementation While PRO measures have value for both clinical and research purposes, there are scientific and logistical barriers to efficient and effective implementation and use of the results-a longstanding problem in practice-based data collection efforts. 26,27 Beyond common concerns such as data validity and quality (eg, data completeness), 28 -30 researchers and clinicians may have conflicting priorities that make it difficult to collect PRO measures to serve research and clinical purposes. The most valid measures and rigorous data collection methods from a research perspective may not have sufficient clinical, quality improvement, or operational value; as such, practices may not be able to justify the time required to modify workflows, implement data collection tools, and train personnel.…”