A national data infrastructure for patient-centered outcomes research.

Abstract:

:Concerted efforts are underway to improve healthcare decision-making through patient-centered outcomes research. These efforts are supported by the Patient-Centered Outcomes Research Trust Fund, which was established within the Patient Protection and Affordable Care Act. This article focuses on describing national data infrastructure efforts that support patient-centered outcomes research. A national data infrastructure has the potential to decrease research costs and improve research throughput. We describe early and current efforts that demonstrated this potential, how the national effort is utilizing the lessons learned from these predecessor efforts and remaining challenges.

journal_name

J Comp Eff Res

authors

Dymek C,Gingold J,Shanbhag A,Fridsma D,Yong PL

doi

10.2217/cer.14.54

subject

Has Abstract

pub_date

2015-01-01 00:00:00

pages

75-87

issue

1

eissn

2042-6305

issn

2042-6313

journal_volume

4

pub_type

杂志文章
  • Welcome to the Journal of Comparative Effectiveness Research.

    abstract::As the Senior Editors of the Journal of Comparative Effectiveness Research (JCER) we are delighted to present you with the first issue of this exciting new publication, focusing on the socially and clinically impactful field of comparative effectiveness research (CER). ...

    journal_title:Journal of comparative effectiveness research

    pub_type:

    doi:10.2217/cer.11.13

    authors: Greenfield S,Rich E

    更新日期:2012-01-01 00:00:00

  • Approaches to the management of functional tricuspid regurgitation.

    abstract::Functional tricuspid regurgitation (FTR) is an acquired valvular abnormality that is most frequently encountered during the evaluation and operative management of left-sided heart failure and left heart valve disease. Observational studies have demonstrated that uncorrected significant FTR during mitral valve surgery ...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer.15.46

    authors: Rogers JH,Bolling SF

    更新日期:2015-11-01 00:00:00

  • Is routine baseline brain imaging needed for all newly diagnosed non-small-cell lung cancer patients?

    abstract::Aim: Dedicated brain imaging is advocated by the National Comprehensive Cancer Network guidelines for newly diagnosed non-small-cell cancer (NSCLC) patients beyond stage I. The current study assessed the performance characteristics of this recommendation. Methods: Through accessing the Surveillance, Epidemiology and E...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2018-0148

    authors: Abdel-Rahman O

    更新日期:2019-06-01 00:00:00

  • Principles for planning and conducting comparative effectiveness research.

    abstract:AIMS:To develop principles for planning and conducting comparative effectiveness research (CER). METHODS:Beginning with a modified existing list of health technology assessment principles, we developed a set of CER principles using literature review, engagement of multiple experts and broad stakeholder feedback. RESU...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer.12.41

    authors: Luce BR,Drummond MF,Dubois RW,Neumann PJ,Jönsson B,Siebert U,Schwartz JS

    更新日期:2012-09-01 00:00:00

  • Study protocol for the dabigatran, apixaban, rivaroxaban, edoxaban, warfarin comparative effectiveness research study.

    abstract::Since 2010, four oral anticoagulants have been approved for marketing in addition to warfarin for treatment of thromboembolic disease. Limited head-to-head data exist comparing these treatments, leaving patients and clinicians with little guidance for selecting a strategy that balances recurrence reduction with bleedi...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2017-0053

    authors: Krumme AA,Pawar A,Schneeweiss S,Glynn RJ,Choudhry NK,Kulldorff M,Ortiz AS,Avorn J,Gagne JJ

    更新日期:2018-01-01 00:00:00

  • Venous stenting for patients with outflow obstruction and leg ulcers: cost-effectiveness and budget impact analyses.

    abstract::Aim: To perform cost-effectiveness analysis (CEA) and budget impact analysis (BIA) comparing stenting to standard medical treatment (SMT) for the management of deep venous outflow obstruction and leg ulcers from the Italian Healthcare Service perspective. Materials & methods: A Markov model was developed to project co...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2020-0030

    authors: Rognoni C,Lugli M,Maleti O,Tarricone R

    更新日期:2020-07-01 00:00:00

  • Stroke Administrative Severity Index: using administrative data for 30-day poststroke outcomes prediction.

    abstract:AIM:Current stroke severity scales cannot be used for archival data. We develop and validate a measure of stroke severity at hospital discharge (Stroke Administrative Severity Index [SASI]) for use in billing data. METHODS:We used the NIH Stroke Scale (NIHSS) as the theoretical framework and identified 285 relevant In...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2017-0058

    authors: Simpson AN,Wilmskoetter J,Hong I,Li CY,Jauch EC,Bonilha HS,Anderson K,Harvey J,Simpson KN

    更新日期:2018-04-01 00:00:00

  • The mixed randomized trial: combining randomized, pragmatic and observational clinical trial designs.

    abstract::Clinical trial designs often fail to deliver data that jointly satisfy evolving demands of both regulatory and reimbursement authorities. We propose a new multi-tiered trial design to integrate efficacy and effectiveness, and address the evolving needs of authorities. The mixed randomized trial allocates patients firs...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2016-0034

    authors: Alsop J,Scott M,Archey W

    更新日期:2016-11-01 00:00:00

  • Screening for breast cancer with Breast-CT in a ProHTA simulation.

    abstract:AIMS:The potential of dedicated Breast-CT is evaluated by simulating its impact onto the performance of the German breast cancer screening program. Attendance rates, cancer detection and economic implications are quantified. METHODS:Based on a prospective health technology assessment approach, we simulated screening i...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer.15.42

    authors: Ruile G,Djanatliev A,Kriza C,Meier F,Leb I,Kalender WA,Kolominsky-Rabas PL,National Leading-Edge Cluster Medical Technologies ‘Medical Valley EMN’.

    更新日期:2015-11-01 00:00:00

  • A meta-analysis platform methodology for determining the comparative effectiveness of antihepatitis C virus regimens.

    abstract:AIM:Many hepatitis C virus regimens are unlikely to be compared head to head. In more difficult to treat populations where there is no standard of care, trials are single arm. We describe a flexible meta-analysis platform in this setting. METHODS:Our meta-analysis is literature based. We illustrate our methodology and...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章,meta分析,评审

    doi:10.2217/cer.14.69

    authors: Broglio KR,Daar ES,Quintana M,Yuan Y,Kalsekar A,Spellberg B,Lewis RJ,Akker Dv,Detry MA,Le T,Berry SM

    更新日期:2015-03-01 00:00:00

  • Health benefits and economic advantages associated with increased utilization of a smoking cessation program.

    abstract::Rationale, aim & objective: The goal of this study was to examine the health and economic impacts related to increased utilization of the Duke Smoking Cessation Program resulting from the addition of two relatively new referral methods - Best Practice Advisory and Population Outreach. Materials & methods: In a compani...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2020-0005

    authors: Datta SK,Dennis PA,Davis JM

    更新日期:2020-08-01 00:00:00

  • Stakeholder participation in comparative effectiveness research: defining a framework for effective engagement.

    abstract::AIMS: Stakeholder engagement is fundamental to comparative effectiveness research (CER), but lacks consistent terminology. This paper aims to define stakeholder engagement and present a conceptual model for involving stakeholders in CER. MATERIALS #ENTITYSTARTX00026; METHODS: The definitions and model were developed f...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer.12.7

    authors: Deverka PA,Lavallee DC,Desai PJ,Esmail LC,Ramsey SD,Veenstra DL,Tunis SR

    更新日期:2012-03-01 00:00:00

  • Survival in unresectable AJCC stage I and II HCC and the effect of DEB-TACE: SEER versus tertiary cancer center cohort study.

    abstract:AIM:To evaluate overall survival (OS) in unresectable American Joint Committee on Cancer (AJCC) stage I/II hepatocellular carcinoma (HCC) treated with drug-eluting-bead transarterial chemoembolization (DEB-TACE) versus best supportive care. MATERIALS & METHODS:OS in consecutive patients with AJCC stage I/II unresectab...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer.15.54

    authors: Xing M,Kokabi N,Prajapati HJ,Close O,Ludwig JM,Kim HS

    更新日期:2016-03-01 00:00:00

  • Low-dose computed tomography screening for lung cancer: results of the first screening round.

    abstract::Evaluation of: National Lung Screening Trial Research Team, Church TR, Black WC, Aberle DR et al. Results of initial low-dose computed tomographic screening for lung cancer. N. Engl. J. Med. 368, 1980-1991 (2013). In 2011, the US NLST trial demonstrated that mortality from lung cancer can be reduced by using low-dose ...

    journal_title:Journal of comparative effectiveness research

    pub_type: 评论,杂志文章

    doi:10.2217/cer.13.57

    authors: Horeweg N,Nackaerts K,Oudkerk M,de Koning HJ

    更新日期:2013-09-01 00:00:00

  • Using primary care electronic health record data for comparative effectiveness research: experience of data quality assessment and preprocessing in The Netherlands.

    abstract:AIM:Details of data quality and how quality issues were solved have not been reported in published comparative effectiveness studies using electronic health record data. METHODS:We developed a conceptual framework of data quality assessment and preprocessing and apply it to a study comparing angiotensin-converting enz...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2015-0022

    authors: Huang Y,Voorham J,Haaijer-Ruskamp FM

    更新日期:2016-07-01 00:00:00

  • Comparative effectiveness research in spine surgery.

    abstract::Degenerative spine disorders are a significant cause of patient morbidity and are a prominent factor in healthcare costs in many countries. Pressure for healthcare cost control and the desire for improved outcomes have led to an expanding emphasis on evidence-based medicine methodologies in spine research. Determinati...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章,评审

    doi:10.2217/cer.12.73

    authors: Lake WB,Brooks NP,Resnick DK

    更新日期:2013-01-01 00:00:00

  • Policy perspectives on alternative models for pharmaceutical rebates: a report from the Institute for Clinical and Economic Review Policy Summit.

    abstract::Alternative approaches to the current rebate system are being considered by policymakers and stakeholders in the private insurance market. This paper presents an analysis of three alternative options to the current rebate model: retaining retroactive rebates but requiring 100% pass-through of rebates and fees to plan ...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2019-0094

    authors: Pearson SD,Segel C,Cole A,Henshall C,Towse A

    更新日期:2019-10-01 00:00:00

  • Cost associated with hematopoietic stem cell transplantation: a retrospective claims data analysis in Germany.

    abstract:AIM:Quantify hematopoietic stem cell transplantation (HSCT) costs in German patients with acute lymphoblastic leukemia (ALL), diffuse large B-cell lymphoma (DLBCL) and follicular lymphoma (FL). METHODS:The primary outcome was direct and indirect costs in patients with ALL/DLBCL/FL who received HSCT between 2010 and 20...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2018-0100

    authors: Mayerhoff L,Lehne M,Hickstein L,Salimullah T,Prieur S,Thomas SK,Zhang J

    更新日期:2019-01-01 00:00:00

  • Revascularization options in stable coronary artery disease: it is not how to revascularize, it is whether and when to revascularize.

    abstract::Patients with acute coronary syndromes and severe multivessel or left main coronary artery disease have better outcomes when prompt revascularization is performed in addition to optimal medical therapy (OMT). However, in patients with stable ischemic heart disease, randomized strategy trials have revealed equipoise be...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章,评审

    doi:10.2217/cer.15.37

    authors: Torosoff MT,Sidhu MS,Desai KP,Fein SA,Boden WE

    更新日期:2015-09-01 00:00:00

  • Comparison between oral and intravenous application of tranexamic acid for total hip arthroplasty: a meta-analysis.

    abstract:AIM:We conducted a meta-analysis to compare the efficacy and safety of oral and intravenous applications of tranexamic acid (TXA) in total hip arthroplasty (THA). MATERIALS & METHODS:Electronic databases, including PubMed, Cochrane CENTRAL, ScienceDirect and Embase, were searched to identify the studies comparing the ...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章,meta分析

    doi:10.2217/cer-2018-0120

    authors: Wang L,Cao JG,Liu J

    更新日期:2019-04-01 00:00:00

  • Big data, advanced analytics and the future of comparative effectiveness research.

    abstract::The intense competition that accompanied the growth of internet-based companies ushered in the era of 'big data' characterized by major innovations in processing of very large amounts of data and the application of advanced analytics including data mining and machine learning. Healthcare is on the cusp of its own era ...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer.14.2

    authors: Berger ML,Doban V

    更新日期:2014-03-01 00:00:00

  • Experimental design issues in choice-based conjoint applied to patient choice in healthcare.

    abstract::Choice-based conjoint (CBC) is used to understand how individuals develop preferences for decision alternatives. When decision alternatives can be described in terms of attributes, researchers want to determine the value respondents attach to various attribute levels. Popular in psychology, marketing, economics and ot...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2019-0115

    authors: Chitturi P,Carides A

    更新日期:2020-01-01 00:00:00

  • Experiences of cancer patients with outpatient care in the USA: a population-based study.

    abstract::Aim: To evaluate the patterns of cancer patients-assessed quality of outpatient care in the USA. Materials & methods: Medical Expenditure Panel Survey datasets for the years 2011, 2013, 2015 and 2017 were accessed and adult participants with a history of cancer diagnosis were reviewed. Participants' assessments of dif...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2020-0124

    authors: Abdel-Rahman O

    更新日期:2020-09-01 00:00:00

  • Web-based decision aids to support breast cancer screening decisions: systematic review and meta-analysis.

    abstract::Aim: Breast cancer is a leading cause of cancer among women. Because guidelines on screening for breast cancer for certain ages are controversial, many experts advocate the use of shared decision making (SDM) using validated decision aids (DAs). Recent studies have concluded that DAs are beneficial; however, the resul...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2020-0052

    authors: Yu L,Li P,Yang S,Guo P,Zhang X,Liu N,Wang J,Zhang W

    更新日期:2020-10-01 00:00:00

  • Effects of mindfulness-based interventions on quality of life of women with breast cancer: a systematic review.

    abstract::Aim: The systematic review assessed the effect of mindfulness-based interventions on the quality of life among women with breast cancer. Methods: PubMed, Cochrane library, EMBASE, Web of Science and CINAHL databases were searched for studies published. Our review assessed the effect of mindfulness-based interventions ...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2019-0053

    authors: Zhang X,Liu D,Li Y,Zhang Y,Zhang B,Wang X,Wang G

    更新日期:2019-08-01 00:00:00

  • When is evidence sufficient for decision-making? A framework for understanding the pace of evidence adoption.

    abstract::Translation of medical evidence into practice has not kept pace with the growth of medical technology and knowledge. We present three case studies--statins, drug eluting stents and bone marrow transplantation for breast cancer--to propose a framework for describing five factors that may influence the rate of adoption....

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer.13.39

    authors: Dubois RW,Lauer M,Perfetto E

    更新日期:2013-07-01 00:00:00

  • Hospital cost impact of orbital atherectomy with angioplasty for critical limb ischemia treatment: a modeling approach.

    abstract:AIM:The incremental cost of peripheral orbital atherectomy system (OAS) plus balloon angioplasty (BA) versus BA-only for critical limb ischemia was estimated. MATERIALS & METHODS:A deterministic simulation model used clinical and healthcare utilization data from the CALCIUM 360° trial and current cost data. Incrementa...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2017-0070

    authors: Shammas NW,Boyes CW,Palli SR,Rizzo JA,Martinsen BJ,Kotlarz H,Mustapha JA

    更新日期:2018-04-01 00:00:00

  • Health researcher views on comparative effectiveness research and research engagement.

    abstract:AIM:To understand researcher capability for and interest in patient-centered comparative effectiveness research (PC-CER), particularly related to engaging with patients/caregivers. MATERIALS & METHODS:Web-based survey of 508 health researchers recruited via professional health research organizations. RESULTS:Most res...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2016-0063

    authors: Forsythe LP,Frank LB,Workman TA,Borsky A,Hilliard T,Harwell D,Fayish L

    更新日期:2017-05-01 00:00:00

  • The utilization of telephone follow-up in the advanced cancer population: a review of the literature.

    abstract:BACKGROUND:Palliative cancer patients often require clinic or hospital follow-up after any treatment intervention they may have received. This is typically done in person at either a hospital or a clinic. In these advanced cancer patients, this may be burdensome and result in attrition. Telephone follow-up is becoming ...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章,评审

    doi:10.2217/cer.12.63

    authors: Zhou M,Holden L,Bedard G,Zeng L,Lam H,Chu D,Lao N,Lauzon N,Chow E

    更新日期:2012-11-01 00:00:00

  • No protocol and no liability: a call for COVID crisis guidelines that protect vulnerable populations.

    abstract::The COVID-19 pandemic is revealing the unacceptable health disparities across New York City and in this country. The mortality rates of vulnerable and minority populations alone suggest a need to re-evaluate clinical decision making protocols, especially given the recently passed Emergency or Disaster Treatment Protec...

    journal_title:Journal of comparative effectiveness research

    pub_type: 杂志文章

    doi:10.2217/cer-2020-0090

    authors: Caraccio C,White RS,Jotwani R

    更新日期:2020-08-01 00:00:00