Oh, the Places We’ll Go: Patient-Reported Outcomes and Electronic Health Records
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...
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| Published in: | The patient : patient-centered outcomes research Vol. 11; no. 6; pp. 591 - 598 |
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| Main Authors: | , , |
| Format: | Journal Article |
| Language: | English |
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Springer International Publishing
01.12.2018
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| ISSN: | 1178-1653, 1178-1661, 1178-1661 |
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| Abstract | 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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| AbstractList | 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. 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.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. |
| Author | Gensheimer, Sarah G. Snyder, Claire F. Wu, Albert W. |
| Author_xml | – sequence: 1 givenname: Sarah G. surname: Gensheimer fullname: Gensheimer, Sarah G. organization: Johns Hopkins School of Medicine, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health – sequence: 2 givenname: Albert W. surname: Wu fullname: Wu, Albert W. email: awu@jhu.edu organization: Johns Hopkins School of Medicine, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health – sequence: 3 givenname: Claire F. surname: Snyder fullname: Snyder, Claire F. organization: Johns Hopkins School of Medicine, Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/29968179$$D View this record in MEDLINE/PubMed |
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| Cites_doi | 10.1016/j.jclinepi.2013.04.005 10.1046/j.1524-4733.2003.65309.x 10.2217/cer-2016-0026 10.1136/amiajnl-2014-002864 10.1097/MLR.0b013e318268aaff 10.1200/JCO.2015.64.9491 10.1377/hlthaff.2010.0660 10.1136/amiajnl-2014-002747 10.1097/MLR.0b013e31829b1d84 10.1197/jamia.M3191 |
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| Copyright | Springer International Publishing AG, part of Springer Nature 2018 |
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| References | Wu, Snyder, Clancy, Steinwachs (CR7) 2010; 29 Ahmed, Berzon, Revicki, Lenderking, Moinpour, Basch, Reeve, Wu (CR6) 2012; 50 CR4 CR3 Jensen, Snyder (CR9) 2016; 34 Fleurence, Curtis, Califf, Platt, Selby, Brown (CR14) 2014; 21 Wu, Kharrazi, Boulware, Snyder (CR5) 2013; 66 CR16 Jensen, Snyder, Basch, Frank, Wu (CR12) 2016; 5 CR11 CR10 Weber, Murphy, McMurry, MacFadden, Nigrin, Churchill, Kohane (CR15) 2009; 16 Snyder, Jensen, Segal, Wu (CR8) 2013; 51 (CR2) 2009; 74 Collins, Hudson, Briggs, Lauer (CR13) 2014; 21 Acquadro, Berzon, Dubois, Leidy, Marquis, Revicki, Rothman (CR1) 2003; 6 AW Wu (321_CR7) 2010; 29 GM Weber (321_CR15) 2009; 16 AW Wu (321_CR5) 2013; 66 321_CR16 RL Fleurence (321_CR14) 2014; 21 RE Jensen (321_CR9) 2016; 34 321_CR10 S Ahmed (321_CR6) 2012; 50 321_CR4 321_CR11 321_CR3 RE Jensen (321_CR12) 2016; 5 C Acquadro (321_CR1) 2003; 6 United States Food and Drug Administration (321_CR2) 2009; 74 CF Snyder (321_CR8) 2013; 51 FS Collins (321_CR13) 2014; 21 |
| References_xml | – volume: 66 start-page: S12 issue: 8 Suppl year: 2013 end-page: S20 ident: CR5 article-title: Measure once, cut twice—adding patient-reported outcome measures to the electronic health record for comparative effectiveness research publication-title: J Clin Epidemiol doi: 10.1016/j.jclinepi.2013.04.005 – volume: 6 start-page: 522 issue: 5 year: 2003 end-page: 531 ident: CR1 article-title: Incorporating the patient’s perspective into drug development and communication: an ad hoc task force report of the patient-reported outcomes (PRO) harmonization group meeting at the Food and Drug Administration, February 16, 2001 publication-title: Value Health doi: 10.1046/j.1524-4733.2003.65309.x – ident: CR3 – ident: CR4 – ident: CR16 – volume: 5 start-page: 561 issue: 6 year: 2016 end-page: 567 ident: CR12 article-title: All together now: findings from a PCORI workshop to align patient-reported outcomes in the electronic health record publication-title: J Comp Eff Res. doi: 10.2217/cer-2016-0026 – ident: CR10 – ident: CR11 – volume: 21 start-page: 576 issue: 4 year: 2014 end-page: 577 ident: CR13 article-title: PCORnet: turning a dream into reality publication-title: J Am Med Inform Assoc doi: 10.1136/amiajnl-2014-002864 – volume: 50 start-page: 1060 issue: 12 year: 2012 end-page: 1070 ident: CR6 article-title: The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy publication-title: Med Care doi: 10.1097/MLR.0b013e318268aaff – volume: 74 start-page: 65132 year: 2009 end-page: 65133 ident: CR2 article-title: Guidance for industry. Patient reported outcome measures: use in medical product development to support labeling claims publication-title: Fed Reg – volume: 34 start-page: 527 issue: 6 year: 2016 end-page: 529 ident: CR9 article-title: PRO-cision medicine: personalizing patient care using patient-reported outcomes publication-title: J Clin Oncol doi: 10.1200/JCO.2015.64.9491 – volume: 29 start-page: 1863 issue: 10 year: 2010 end-page: 1871 ident: CR7 article-title: Adding the patient perspective to comparative effectiveness research publication-title: Health Aff (Millwood). doi: 10.1377/hlthaff.2010.0660 – volume: 21 start-page: 578 issue: 4 year: 2014 end-page: 582 ident: CR14 article-title: Launching PCORnet, a national patient-centered clinical research network publication-title: J Am Med Inform Assoc doi: 10.1136/amiajnl-2014-002747 – volume: 51 start-page: S73 issue: 8 Suppl 3 year: 2013 end-page: S79 ident: CR8 article-title: Patient-reported outcomes: putting the patient perspective in patient-centered outcomes research publication-title: Med Care doi: 10.1097/MLR.0b013e31829b1d84 – volume: 16 start-page: 624 issue: 5 year: 2009 end-page: 630 ident: CR15 article-title: The Shared Health Research Information Network (SHRINE): a prototype federated query tool for clinical data repositories publication-title: J Am Med Inform Assoc doi: 10.1197/jamia.M3191 – ident: 321_CR3 – ident: 321_CR10 – volume: 66 start-page: S12 issue: 8 Suppl year: 2013 ident: 321_CR5 publication-title: J Clin Epidemiol doi: 10.1016/j.jclinepi.2013.04.005 – volume: 16 start-page: 624 issue: 5 year: 2009 ident: 321_CR15 publication-title: J Am Med Inform Assoc doi: 10.1197/jamia.M3191 – volume: 51 start-page: S73 issue: 8 Suppl 3 year: 2013 ident: 321_CR8 publication-title: Med Care doi: 10.1097/MLR.0b013e31829b1d84 – ident: 321_CR11 – ident: 321_CR4 – volume: 34 start-page: 527 issue: 6 year: 2016 ident: 321_CR9 publication-title: J Clin Oncol doi: 10.1200/JCO.2015.64.9491 – volume: 50 start-page: 1060 issue: 12 year: 2012 ident: 321_CR6 publication-title: Med Care doi: 10.1097/MLR.0b013e318268aaff – volume: 5 start-page: 561 issue: 6 year: 2016 ident: 321_CR12 publication-title: J Comp Eff Res. doi: 10.2217/cer-2016-0026 – volume: 6 start-page: 522 issue: 5 year: 2003 ident: 321_CR1 publication-title: Value Health doi: 10.1046/j.1524-4733.2003.65309.x – volume: 74 start-page: 65132 year: 2009 ident: 321_CR2 publication-title: Fed Reg – ident: 321_CR16 – volume: 21 start-page: 578 issue: 4 year: 2014 ident: 321_CR14 publication-title: J Am Med Inform Assoc doi: 10.1136/amiajnl-2014-002747 – volume: 29 start-page: 1863 issue: 10 year: 2010 ident: 321_CR7 publication-title: Health Aff (Millwood). doi: 10.1377/hlthaff.2010.0660 – volume: 21 start-page: 576 issue: 4 year: 2014 ident: 321_CR13 publication-title: J Am Med Inform Assoc doi: 10.1136/amiajnl-2014-002864 |
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| SubjectTerms | Health Administration Health Economics Medicine Medicine & Public Health Pharmacoeconomics and Health Outcomes Practical Application Public Health Quality of Life Research |
| Title | Oh, the Places We’ll Go: Patient-Reported Outcomes and Electronic Health Records |
| URI | https://link.springer.com/article/10.1007/s40271-018-0321-9 https://www.ncbi.nlm.nih.gov/pubmed/29968179 https://www.proquest.com/docview/2063711364 |
| Volume | 11 |
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