Patient-reported outcomes (PROs): Putting the patient perspective in patient-centered outcomes research

Claire Snyder, Roxanne E. Jensen, Jodi Segal, Albert W Wu

Research output: Contribution to journalArticle

Abstract

Patient-centered outcomes research (PCOR) aims to improve care quality and patient outcomes by providing information that patients, clinicians, and family members need regarding treatment alternatives, and emphasizing patient input to inform the research process. PCOR capitalizes on available data sources and generates new evidence to provide timely and relevant information and can be conducted using prospective data collection, disease registries, electronic medical records, aggregated results from prior research, and administrative claims. Given PCOR's emphasis on the patient perspective, methods to incorporate patient-reported outcomes (PROs) are critical. PROs are defined by the US Food and Drug Administration as "Any report coming directly from patients... about a health condition and its treatment." However, PROs have not routinely been collected in a way that facilitates their use in PCOR. Electronic medical records, disease registries, and administrative data have only rarely collected, or been linked to, PROs. Recent technological developments facilitate the electronic collection of PROs and linkage of PRO data, offering new opportunities for putting the patient perspective in PCOR. This paper describes the importance of and methods for using PROs for PCOR. We (1) define PROs; (2) identify how PROs can be used in PCOR and the critical role of electronic data methods for facilitating the use of PRO data in PCOR; (3) outline the challenges and key unanswered questions that need to be addressed for the routine use of PROs in PCOR; and (4) discuss policy and research interventions to accelerate the integration of PROs with clinical data.

Original languageEnglish (US)
JournalMedical Care
Volume51
Issue number8 SUPPL.3
DOIs
StatePublished - Aug 2013

Fingerprint

Patient Outcome Assessment
Electronic Health Records
Registries
Patient Reported Outcome Measures
Research
Quality of Health Care
Information Storage and Retrieval
United States Food and Drug Administration

Keywords

  • electronic data methods
  • patient-centered outcomes research
  • patient-reported outcomes

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health

Cite this

Patient-reported outcomes (PROs) : Putting the patient perspective in patient-centered outcomes research. / Snyder, Claire; Jensen, Roxanne E.; Segal, Jodi; Wu, Albert W.

In: Medical Care, Vol. 51, No. 8 SUPPL.3, 08.2013.

Research output: Contribution to journalArticle

@article{7bd8605b4927424081cf1be1cae361ec,
title = "Patient-reported outcomes (PROs): Putting the patient perspective in patient-centered outcomes research",
abstract = "Patient-centered outcomes research (PCOR) aims to improve care quality and patient outcomes by providing information that patients, clinicians, and family members need regarding treatment alternatives, and emphasizing patient input to inform the research process. PCOR capitalizes on available data sources and generates new evidence to provide timely and relevant information and can be conducted using prospective data collection, disease registries, electronic medical records, aggregated results from prior research, and administrative claims. Given PCOR's emphasis on the patient perspective, methods to incorporate patient-reported outcomes (PROs) are critical. PROs are defined by the US Food and Drug Administration as {"}Any report coming directly from patients... about a health condition and its treatment.{"} However, PROs have not routinely been collected in a way that facilitates their use in PCOR. Electronic medical records, disease registries, and administrative data have only rarely collected, or been linked to, PROs. Recent technological developments facilitate the electronic collection of PROs and linkage of PRO data, offering new opportunities for putting the patient perspective in PCOR. This paper describes the importance of and methods for using PROs for PCOR. We (1) define PROs; (2) identify how PROs can be used in PCOR and the critical role of electronic data methods for facilitating the use of PRO data in PCOR; (3) outline the challenges and key unanswered questions that need to be addressed for the routine use of PROs in PCOR; and (4) discuss policy and research interventions to accelerate the integration of PROs with clinical data.",
keywords = "electronic data methods, patient-centered outcomes research, patient-reported outcomes",
author = "Claire Snyder and Jensen, {Roxanne E.} and Jodi Segal and Wu, {Albert W}",
year = "2013",
month = "8",
doi = "10.1097/MLR.0b013e31829b1d84",
language = "English (US)",
volume = "51",
journal = "Medical Care",
issn = "0025-7079",
publisher = "Lippincott Williams and Wilkins",
number = "8 SUPPL.3",

}

TY - JOUR

T1 - Patient-reported outcomes (PROs)

T2 - Putting the patient perspective in patient-centered outcomes research

AU - Snyder, Claire

AU - Jensen, Roxanne E.

AU - Segal, Jodi

AU - Wu, Albert W

PY - 2013/8

Y1 - 2013/8

N2 - Patient-centered outcomes research (PCOR) aims to improve care quality and patient outcomes by providing information that patients, clinicians, and family members need regarding treatment alternatives, and emphasizing patient input to inform the research process. PCOR capitalizes on available data sources and generates new evidence to provide timely and relevant information and can be conducted using prospective data collection, disease registries, electronic medical records, aggregated results from prior research, and administrative claims. Given PCOR's emphasis on the patient perspective, methods to incorporate patient-reported outcomes (PROs) are critical. PROs are defined by the US Food and Drug Administration as "Any report coming directly from patients... about a health condition and its treatment." However, PROs have not routinely been collected in a way that facilitates their use in PCOR. Electronic medical records, disease registries, and administrative data have only rarely collected, or been linked to, PROs. Recent technological developments facilitate the electronic collection of PROs and linkage of PRO data, offering new opportunities for putting the patient perspective in PCOR. This paper describes the importance of and methods for using PROs for PCOR. We (1) define PROs; (2) identify how PROs can be used in PCOR and the critical role of electronic data methods for facilitating the use of PRO data in PCOR; (3) outline the challenges and key unanswered questions that need to be addressed for the routine use of PROs in PCOR; and (4) discuss policy and research interventions to accelerate the integration of PROs with clinical data.

AB - Patient-centered outcomes research (PCOR) aims to improve care quality and patient outcomes by providing information that patients, clinicians, and family members need regarding treatment alternatives, and emphasizing patient input to inform the research process. PCOR capitalizes on available data sources and generates new evidence to provide timely and relevant information and can be conducted using prospective data collection, disease registries, electronic medical records, aggregated results from prior research, and administrative claims. Given PCOR's emphasis on the patient perspective, methods to incorporate patient-reported outcomes (PROs) are critical. PROs are defined by the US Food and Drug Administration as "Any report coming directly from patients... about a health condition and its treatment." However, PROs have not routinely been collected in a way that facilitates their use in PCOR. Electronic medical records, disease registries, and administrative data have only rarely collected, or been linked to, PROs. Recent technological developments facilitate the electronic collection of PROs and linkage of PRO data, offering new opportunities for putting the patient perspective in PCOR. This paper describes the importance of and methods for using PROs for PCOR. We (1) define PROs; (2) identify how PROs can be used in PCOR and the critical role of electronic data methods for facilitating the use of PRO data in PCOR; (3) outline the challenges and key unanswered questions that need to be addressed for the routine use of PROs in PCOR; and (4) discuss policy and research interventions to accelerate the integration of PROs with clinical data.

KW - electronic data methods

KW - patient-centered outcomes research

KW - patient-reported outcomes

UR - http://www.scopus.com/inward/record.url?scp=84879883334&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84879883334&partnerID=8YFLogxK

U2 - 10.1097/MLR.0b013e31829b1d84

DO - 10.1097/MLR.0b013e31829b1d84

M3 - Article

C2 - 23774513

AN - SCOPUS:84879883334

VL - 51

JO - Medical Care

JF - Medical Care

SN - 0025-7079

IS - 8 SUPPL.3

ER -