Systems for Helping Veterans Comprehend Electronic Health Record Notes

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DESCRIPTION (provided by applicant): The Veterans Health Administration (VHA) is committed to the sharing of Veteran's health information in its efforts to improve the patient-provider relationship in care delivery. The VHA has demonstrated this commitment with the initiation of MyHealtheVet (MHV) patient portal which also utilizes secure messaging between Veterans and their care teams as a way to improve communication. Clinical notes represent a key piece of patient information that could further enhance this relationship. In January 2013, the VA made Veterans' primary care provider's clinical notes available to their patients through the Blue Button feature within the MHV portal. Patient access to full text clinical notes has the potential to improve patient engagement and care. However, a recent study demonstrated that patients- especially those who are vulnerable (e.g., lower literacy, lower income)-can be perplexed by EHR notes. Inadvertently, this confusion and miscommunication may result in unintended increases in service utilization, and changes in perceptions that may disrupt patient-provider relationships. This proposal seeks to develop an innovative tool which will aid Veterans in the comprehension and effective use of their clinical notes to better their care outcomes. We will develop and evaluate NoteAid, a multi-component, intelligent natural language processing (NLP) system designed to translate medical jargon into consumer oriented concepts and provide "patient-friendly" links to related educational material from trusted resources. We expect that NoteAid will improve Veterans' comprehension of their EHR notes, which in turn will increase patient autonomy and self-management. No current HSR&D projects are evaluating this new innovation, and operational leaders are seeking guidance on how to further advance sharing of clinical information with Veterans. Our Specific Aims are to: Aim 1: Develop a comprehensive EHR health knowledge resource-NoteKnow. It will link medical concepts (e.g., myocardial infarction) to the corresponding consumer oriented concepts (e.g., heart attack), along with definitions and high-quality educational material. Aim 2: Develop, implement, and assess NoteAid, a system that will decipher EHR notes and link them to NoteKnow. NoteAid will integrate innovative NLP approaches. We will assess the NoteAid system using expert walkthrough, usability testing, and task-driven cognitive evaluation. Aim 3: Evaluate NoteAid in a randomized comparison study. We will recruit 250 Veterans from the Worcester VA outpatient clinic. The Veterans will be randomly assigned to two groups: 1.) use of standard EHR notes; 2.) use of EHR notes with NoteAid support. The Study outcomes will be guided by Self- Determination Theory, including: 1.) perceived autonomy support of NoteAid and, 2.) the effect of NoteAid on Veteran outcomes (e.g., motivation and competence). Our integrated research team will include Veterans, physicians, a health educator, informaticians, a biostatistician, and health literacy and communication scientists. We will employ Veterans as co-investigators throughout the NoteAid study to ensure our focus on the end-user. Veterans will be engaged at multiple levels, including intervention refinement (usability tests) and creation (Veteran generated content). In both Aims 1 and 2, Veterans will drive the excellence of the NoteAid system, maximizing the potential of the system to support user comprehension in Aim 3. NoteAid will be a stand-alone and open-source tool that will be made available to national health IT organizations, healthcare providers and patients at the completion of this study. The potential impact of this system is high.