Literature DB >> 20473201

Electronic patient-reported data capture as a foundation of rapid learning cancer care.

Amy P Abernethy1, Asif Ahmad, S Yousuf Zafar, Jane L Wheeler, Jennifer Barsky Reese, H Kim Lyerly.   

Abstract

BACKGROUND: "Rapid learning healthcare" presents a new infrastructure to support comparative effectiveness research. By leveraging heterogeneous datasets (eg, clinical, administrative, genomic, registry, and research), health information technology, and sophisticated iterative analyses, rapid learning healthcare provides a real-time framework in which clinical studies can evaluate the relative impact of therapeutic approaches on a diverse array of measures.
PURPOSE: This article describes an effort, at 1 academic medical center, to demonstrate what rapid learning healthcare might look like in operation. The article describes the process of developing and testing the components of this new model of integrated clinical/research function, with the pilot site being an academic oncology clinic and with electronic patient-reported outcomes (ePROs) being the foundational dataset. RESEARCH
DESIGN: Steps included: feasibility study of the ePRO system; validation study of ePRO collection across 3 cancers; linking ePRO and other datasets; implementation; stakeholder alignment and buy in, and; demonstration through use cases.
SUBJECTS: Two use cases are presented; participants were metastatic breast cancer (n = 65) and gastrointestinal cancer (n = 113) patients at 2 academic medical centers.
RESULTS: (1) Patient-reported symptom data were collected with tablet computers; patients with breast and gastrointestinal cancer indicated high levels of sexual distress, which prompted multidisciplinary response, design of an intervention, and successful application for funding to study the intervention's impact. (2) The system evaluated the longitudinal impact of a psychosocial care program provided to patients with breast cancer. Participants used tablet computers to complete PRO surveys; data indicated significant impact on psychosocial outcomes, notably distress and despair, despite advanced disease. Results return to the clinic, allowing iterative update and evaluation.
CONCLUSIONS: An ePRO-based rapid learning cancer clinic is feasible, providing real-time research-quality data to support comparative effectiveness research.

Entities:  

Mesh:

Year:  2010        PMID: 20473201     DOI: 10.1097/MLR.0b013e3181db53a4

Source DB:  PubMed          Journal:  Med Care        ISSN: 0025-7079            Impact factor:   2.983


  59 in total

1.  Development of a survivorship needs assessment planning tool for head and neck cancer survivors and their caregivers: a preliminary study.

Authors:  K R Sterba; J Zapka; N LaPelle; T K Garris; A Buchanan; M Scallion; T Day
Journal:  J Cancer Surviv       Date:  2017-06-21       Impact factor: 4.442

Review 2.  Setting the vision: applied patient-reported outcomes and smart, connected digital healthcare systems to improve patient-centered outcomes prediction in critical illness.

Authors:  Nicholas G Wysham; Amy P Abernethy; Christopher E Cox
Journal:  Curr Opin Crit Care       Date:  2014-10       Impact factor: 3.687

3.  Use of an electronic patient-reported outcome measurement system to improve distress management in oncology.

Authors:  Sophia K Smith; Krista Rowe; Amy P Abernethy
Journal:  Palliat Support Care       Date:  2013-10-16

Review 4.  The value of data collection within a palliative care program.

Authors:  Arif H Kamal; David C Currow; Christine Ritchie; Janet Bull; Jane L Wheeler; Amy P Abernethy
Journal:  Curr Oncol Rep       Date:  2011-08       Impact factor: 5.075

Review 5.  Legal and regulatory considerations associated with use of patient-generated health data from social media and mobile health (mHealth) devices.

Authors:  C Petersen; P DeMuro
Journal:  Appl Clin Inform       Date:  2015-01-14       Impact factor: 2.342

Review 6.  Clinical Data Reuse or Secondary Use: Current Status and Potential Future Progress.

Authors:  S M Meystre; C Lovis; T Bürkle; G Tognola; A Budrionis; C U Lehmann
Journal:  Yearb Med Inform       Date:  2017-09-11

7.  Pruritus in patients with solid tumors: an overlooked supportive care need.

Authors:  Jaxon J Vallely; Kathryn E Hudson; Susan C Locke; Steven P Wolf; Gregory P Samsa; Amy P Abernethy; Thomas W LeBlanc
Journal:  Support Care Cancer       Date:  2019-02-14       Impact factor: 3.603

8.  Palliative care needs of patients with cancer living in the community.

Authors:  Arif H Kamal; Janet Bull; Dio Kavalieratos; Donald H Taylor; William Downey; Amy P Abernethy
Journal:  J Oncol Pract       Date:  2011-11       Impact factor: 3.840

9.  Using patient-reported outcomes to understand the effectiveness of guideline-concordant care for post-traumatic stress disorder in clinical practice.

Authors:  Brian Shiner; Jiang Gui; Christine Leonard Westgate; Paula P Schnurr; Bradley V Watts; Sarah L Cornelius; Shira Maguen
Journal:  J Eval Clin Pract       Date:  2019-05-21       Impact factor: 2.431

10.  Do high symptom scores trigger clinical actions? An audit after implementing electronic symptom screening.

Authors:  Hsien Seow; Jonathan Sussman; Lorraine Martelli-Reid; Greg Pond; Daryl Bainbridge
Journal:  J Oncol Pract       Date:  2012-08-21       Impact factor: 3.840

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