An informatics research agenda to support patient and family empowerment and engagement in care and recovery during and after hospitalization

Sarah Collins; Patricia Dykes; David W Bates; Brittany Couture; Ronen Rozenblum; Jennifer Prey; Kristin O'Reilly; Patricia Q Bourie; Cindy Dwyer; S Ryan Greysen; Jeffery Smith; Michael Gropper; Anuj K Dalal

doi:10.1093/jamia/ocx054

An informatics research agenda to support patient and family empowerment and engagement in care and recovery during and after hospitalization

J Am Med Inform Assoc. 2018 Feb 1;25(2):206-209. doi: 10.1093/jamia/ocx054.

Authors

Sarah Collins^{1

2

3}, Patricia Dykes^{1

2}, David W Bates^{1

2

3

4}, Brittany Couture¹, Ronen Rozenblum^{1

2}, Jennifer Prey⁵, Kristin O'Reilly⁶, Patricia Q Bourie⁶, Cindy Dwyer⁷, S Ryan Greysen⁸, Jeffery Smith⁹, Michael Gropper¹⁰, Anuj K Dalal^{1

2}

Affiliations

¹ Brigham and Women's Hospital, Boston, MA, USA.
² Department of Medicine, Harvard Medical School, Boston, MA, USA.
³ Partners Healthcare System, Somerville, MA, USA.
⁴ Department of Health Policy and Management, Harvard School of Public Health, Boston, MA, USA.
⁵ Department of Biomedical Informatics, Columbia University, New York, NY, USA.
⁶ Beth Israel Deaconess Medical Center, Boston, MA, USA.
⁷ The Johns Hopkins Hospital, Baltimore, MD, USA.
⁸ Department of Medicine, University of Pennsylvania School of Medicine, Philadelphia, PA, USA.
⁹ American Medical Informatics Association.
¹⁰ Department of Anesthesia and Perioperative Care, University of California San Francisco, San Francisco, CA, USA.

Abstract

As part of an interdisciplinary acute care patient portal task force with members from 10 academic medical centers and professional organizations, we held a national workshop with 71 attendees representing over 30 health systems, professional organizations, and technology companies. Our consensus approach identified 7 key sociotechnical and evaluation research focus areas related to the consumption and capture of information from patients, care partners (eg, family, friends), and clinicians through portals in the acute and post-acute care settings. The 7 research areas were: (1) standards, (2) privacy and security, (3) user-centered design, (4) implementation, (5) data and content, (6) clinical decision support, and (7) measurement. Patient portals are not yet in routine use in the acute and post-acute setting, and research focused on the identified domains should increase the likelihood that they will deliver benefit, especially as there are differences between needs in acute and post-acute care compared to the ambulatory setting.

Keywords: patient engagement; patient experience; patient portals; quality of care.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Computer Security
Continuity of Patient Care*
Decision Support Systems, Clinical
Family
Hospitalization*
Humans
Informatics / organization & administration
Informatics / standards*
Patient Participation*
Patient Portals* / standards