Envisioning a learning health care system: the electronic primary care research network, a case study.
OBJECTIVE
The learning health care system refers to the cycle of turning health care data into knowledge, translating that knowledge into practice, and creating new data by means of advanced information technology. The electronic Primary Care Research Network (ePCRN) was a project, funded by the U.S. National Institutes of Health, with the aim to facilitate clinical research using primary care electronic health records (EHRs).


METHODS
We identified the requirements necessary to deliver clinical studies via a distributed electronic network linked to EHRs. After we explored a variety of informatics solutions, we constructed a functional prototype of the software. We then explored the barriers to adoption of the prototype software within U.S. practice-based research networks.


RESULTS
We developed a system to assist in the identification of eligible cohorts from EHR data. To preserve privacy, counts and flagging were performed remotely, and no data were transferred out of the EHR. A lack of batch export facilities from EHR systems and ambiguities in the coding of clinical data, such as blood pressure, have so far prevented a full-scale deployment. We created an international consortium and a model for sharing further ePCRN development across a variety of ongoing projects in the United States and Europe.


CONCLUSIONS
A means of accessing health care data for research is not sufficient in itself to deliver a learning health care system. EHR systems need to use sophisticated tools to capture and preserve rich clinical context in coded data, and business models need to be developed that incentivize all stakeholders from clinicians to vendors to participate in the system.
Department of Primary Care and Public Health Sciences, King's College, London, UK. Brendan.Delaney@kcl.ac.uk
Brendan C
BC
Delaney
Kevin A
KA
Peterson
Stuart
S
Speedie
Adel
A
Taweel
Theodoros N
TN
Arvanitis
F D Richard
FD
Hobbs
D003219:Confidentiality; D004059:Diffusion of Innovation; D057286:Electronic Health Records / Q000458:organization & administration*; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D020407:Internet; D019982:Organizational Case Studies; D010865:Pilot Projects; D011320:Primary Health Care; D016730:Program Development; D016032:Randomized Controlled Trials as Topic / Q000379:methods*; D012106:Research; D014481:United States; D014584:User-Computer Interface