TY - JOUR
T1 - Oh, the Places We’ll Go
T2 - Patient-Reported Outcomes and Electronic Health Records
AU - PRO-EHR Users’ Guide Steering Group
AU - PRO-EHR Users’ Guide Working Group
AU - Gensheimer, Sarah G.
AU - Wu, Albert W.
AU - Snyder, Claire F.
AU - Basch, Ethan
AU - Gerson, Jason
AU - Holve, Erin
AU - Hunt, David R.
AU - Smider, Nancy
AU - Snyder, Claire
AU - Stiefel, Matt
AU - Hills, Mellanie True
AU - Smith, Ashley Wilder
AU - Weinfurt, Kevin
AU - Wu, Albert W.
AU - Ali, Joseph
AU - Basch, Ethan
AU - Baumhauer, Judy
AU - Bellows, Jim
AU - Chung, Arlene
AU - Halyard, Michele
AU - Hartzler, Andrea
AU - Hess, Rachel
AU - Holve, Erin
AU - Jensen, Roxanne
AU - Katzan, Irene
AU - Kerrigan, Carolyn
AU - Lavallee, Danielle
AU - Morgan, Esi
AU - Pawlson, Greg
AU - Savitz, Lucy
AU - Sittig, Dean F.
AU - Velikova, Galina
AU - Wagle, Neil
AU - Weinfurt, Kevin
AU - Whicher, Danielle
AU - Wright, Adam
N1 - Funding Information:
Funding The creation of the Users’ Guide was funded by the Patient-Centered Outcomes Research Institute (PCORI). No funding was received for this article. Dr. Wu and Ms. Gensheimer have no conflicts of interest to disclose. Ms. Gensheimer’s work is funded by the Medical Scientist Training Program. Johns Hopkins has received research funding from Anthem and Genentech for projects Dr. Snyder has and is conducting. She previously consulted for Pfizer Oncology and received travel support from Optum to speak at the 2017 ISPOR European Congress. She received payment from Tower Health for a continuing medical education (CME) lecture and receives royalties as a section author for UptoDate. She previously owned personally purchased stocks in a number of for-profit health care companies.
Funding Information:
The PRO-EHR Users? Guide Steering Group includes Ethan Basch, MD, MSc (Lineberger Comprehensive Cancer Center at the University of North Carolina-Chapel Hill); Jason Gerson, PhD (Patient-Centered Outcomes Research Institute); Erin Holve, PhD, MPH, MPP (Department of Health Care Finance in the Government of the District of Columbia); David R. Hunt, MD, FACS (Office of the National Coordinator for Health Information Technology); Nancy Smider, PhD (Epic); Claire Snyder, PhD (Johns Hopkins School of Medicine); Matt Stiefel, MS, MPA (Kaiser Permanente Care Management Institute); Mellanie True Hills, CSP (Patient Advocate, StopAfib.org); Ashley Wilder Smith, PhD (National Cancer Institute [not an author]); Kevin Weinfurt, PhD (Duke Clinical Research Institute); and Albert W. Wu, MD, MPH (Johns Hopkins Bloomberg School of Public Health). The PRO-EHR Users? Guide Working Group includes Joseph Ali, JD (Johns Hopkins Berman Institute of Bioethics); Ethan Basch, MD, MSc (Lineberger Comprehensive Cancer Center at the University of North Carolina-Chapel Hill); Judy Baumhauer, MD, MPH (University of Rochester Medical Center); Jim Bellows, PhD, MPH (Kaiser Permanente Care Management Institute); Arlene Chung, MD, MHA, MMCi (University of North Carolina School of Medicine); Michele Halyard, MD (Mayo Clinic); Andrea Hartzler, PhD (University of Washington); Rachel Hess, MD, MS (University of Utah); Erin Holve, PhD, MPH, MPP (Department of Health Care Finance in the Government of the District of Columbia); Roxanne Jensen, PhD (Georgetown Lombardi Comprehensive Cancer Center); Irene Katzan, MD (Cleveland Clinic); Carolyn Kerrigan, MD, MHCDS (Dartmouth-Hitchcock Medical Center); Danielle Lavallee, PharmD, PhD (University of Washington); Esi Morgan, MD, MSCE (Cincinnati Children?s Hospital Medical Center); Greg Pawlson, MD, MPH (P&M Healthcare Insights); Lucy Savitz, PhD, MBA (Kaiser Permanente, Northwest Region); Dean F. Sittig, PhD (University of Texas Health Science Center at Houston); Galina Velikova, MBBS, PhD (Leeds Institute of Cancer and Pathology, University of Leeds); Neil Wagle, MD, MBA (Partners Healthcare); Kevin Weinfurt, PhD (Duke Clinical Research Institute); Danielle Whicher, PhD, MHS (Patient-Centered Outcomes Research Institute); and Adam Wright, PhD (Harvard Brigham & Women?s Hospital). All working group members authored sections of the Users? Guide on which this article is based. This article was circulated to and commented on by steering and working group members. The Users? Guide was developed by Johns Hopkins University through a contract from the Patient-Centered Outcomes Research Institute (PCORI) under contract number JHU 10.01.14 TO 2 08.01.15. The International Society for Quality of Life Research (ISOQOL) was a collaborating partner. All statements, findings and conclusions in this publication are solely those of the authors and do not necessarily represent the views of the PCORI, its board of governors, or its Methodology Committee. We want to thank Mary Kay Margolis, MPH, MHA, from PCORI for her assistance throughout the project. The members of the PRO-EHR Users? Guide Steering Group and PRO-EHR Users? Guide Working Group are listed in acknowledgements. The creation of the Users? Guide was funded by the Patient-Centered Outcomes Research Institute (PCORI). No funding was received for this article. Dr. Wu and Ms. Gensheimer have no conflicts of interest to disclose. Ms. Gensheimer?s work is funded by the Medical Scientist Training Program. Johns Hopkins has received research funding from Anthem and Genentech for projects Dr. Snyder has and is conducting. She previously consulted for Pfizer Oncology and received travel support from Optum to speak at the 2017 ISPOR European Congress. She received payment from Tower Health for a continuing medical education (CME) lecture and receives royalties as a section author for UptoDate. She previously owned personally purchased stocks in a number of for-profit health care companies.
Publisher Copyright:
© 2018, Springer International Publishing AG, part of Springer Nature.
PY - 2018/12/1
Y1 - 2018/12/1
N2 - The growing measurement of patient-reported outcomes (PROs) and adoption of electronic health records (EHRs) presents an unprecedented opportunity to improve health care for patients and populations. The integration of PROs into EHRs can promote patient-centered care and advance quality improvement initiatives, research, and population health. Despite these potential benefits, there are few best practices to help organizations achieve integration. To integrate PROs into EHRs, organizations should evaluate the advantages and disadvantages of various approaches within three themes: Planning, Selection, and Engagement. Planning considerations for integration include what strategy will be used, how the integrated system will be governed, ethical and legal issues, and how data from multiple EHRs can be pooled across organizations. Selection considerations involve identifying which patient population to target for PRO data collection on the basis of the intended use of the data in the health care system, and then choosing specific outcomes and their measures. Engagement considerations include how, where, and with what frequency patients will respond to PRO measures, how to display PRO data in EHRs, how clinical teams will act upon PRO data, and how to train, support and incent clinical teams and patients to incorporate PRO data into care. There is no most effective model that will work in all contexts. Organizations wishing to integrate PROs and EHRs should assemble the multidisciplinary expertise needed to evaluate the advantages and disadvantages of the various approaches for their particular context. We specifically recommend that organizations think carefully about stakeholder participation; design their system with data sharing in mind; develop a framework to aid in PRO selection; create guidelines to support PRO interpretation and action for patients and clinicians; and ensure patients have access to their own PRO data.
AB - The growing measurement of patient-reported outcomes (PROs) and adoption of electronic health records (EHRs) presents an unprecedented opportunity to improve health care for patients and populations. The integration of PROs into EHRs can promote patient-centered care and advance quality improvement initiatives, research, and population health. Despite these potential benefits, there are few best practices to help organizations achieve integration. To integrate PROs into EHRs, organizations should evaluate the advantages and disadvantages of various approaches within three themes: Planning, Selection, and Engagement. Planning considerations for integration include what strategy will be used, how the integrated system will be governed, ethical and legal issues, and how data from multiple EHRs can be pooled across organizations. Selection considerations involve identifying which patient population to target for PRO data collection on the basis of the intended use of the data in the health care system, and then choosing specific outcomes and their measures. Engagement considerations include how, where, and with what frequency patients will respond to PRO measures, how to display PRO data in EHRs, how clinical teams will act upon PRO data, and how to train, support and incent clinical teams and patients to incorporate PRO data into care. There is no most effective model that will work in all contexts. Organizations wishing to integrate PROs and EHRs should assemble the multidisciplinary expertise needed to evaluate the advantages and disadvantages of the various approaches for their particular context. We specifically recommend that organizations think carefully about stakeholder participation; design their system with data sharing in mind; develop a framework to aid in PRO selection; create guidelines to support PRO interpretation and action for patients and clinicians; and ensure patients have access to their own PRO data.
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UR - http://www.scopus.com/inward/citedby.url?scp=85049583274&partnerID=8YFLogxK
U2 - 10.1007/s40271-018-0321-9
DO - 10.1007/s40271-018-0321-9
M3 - Article
C2 - 29968179
AN - SCOPUS:85049583274
VL - 11
SP - 591
EP - 598
JO - Patient
JF - Patient
SN - 1178-1653
IS - 6
ER -