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PatientViewpoint: a website for patient-reported outcomes assessment

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Abstract

Purpose

To develop a prototype website to collect patient-reported outcomes in outpatient clinical oncology and link the data with the electronic medical record (EMR).

Methods

A multidisciplinary Research Network, including experts in outcomes research, clinical oncology, nursing, social work, information technology, EMRs, behavioral science, decision science, clinical trials, law, and a cancer survivor, was formed to design the prototype website. The Research Network developed the initial website specifications, elicited feedback from patients (n = 20) and clinicians (n = 7), constructed the website, and conducted usability testing (n = 10).

Results

Clinicians reported that the website could improve clinical practice if it was not burdensome and were most interested in tracking change over time. Patients were interested in using the website because of the potential to facilitate communication with their clinicians. Patients emphasized the importance of short and simple surveys and a user-friendly interface. The PatientViewpoint website was designed to meet these specifications. Usability testing suggested that patients had few problems accessing and using the site.

Conclusions

Preliminary reports from clinicians and patients suggest that a website to collect PROs and link them with the EMR could help improve the quality of cancer care. Further pilot-testing will evaluate the use, usefulness, and acceptability of PatientViewpoint.

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Abbreviations

EMR:

Electronic medical record

HRQOL:

Health-related quality of life

PRO:

Patient-reported outcome

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Acknowledgments

The authors would like to thank the Website Development Team (Michelle Campbell, Ray Hamann, John Hildebrand, Laxmi Machavarapu) and Bryce Reeve, PhD, our National Cancer Institute project officer. This research was funded by a grant from the National Cancer Institute (R21 CA113223-01, Dr. Albert Wu, PI). Dr. Snyder is supported by a Mentored Research Scholar Grant from the American Cancer Society (MRSG-08-011-01-CPPB).

Author information

Authors and Affiliations

  1. Johns Hopkins School of Medicine, Baltimore, MD, 21205, USA

    Claire F. Snyder & Albert W. Wu

  2. Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

    Claire F. Snyder, Roxanne Jensen & Albert W. Wu

  3. Maryland Department of Health and Mental Hygiene, Baltimore, MD, USA

    S. Orion Courtin

Authors
  1. Claire F. Snyder
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  2. Roxanne Jensen
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  3. S. Orion Courtin
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  4. Albert W. Wu
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Consortia

Website for Outpatient QOL Assessment Research Network

Corresponding author

Correspondence to Claire F. Snyder.

Additional information

The details of the “Website for Outpatient QOL Assessment Research Network” is found in the “Appendix”.

Appendix

Appendix

Neil Aaronson, PhD (Netherlands Cancer Institute, Amsterdam, the Netherlands); Michael Brundage, MD, MSc (Queen’s University, Kingston, ON, CA); Carolyn Gotay, PhD (University of British Columbia, Vancouver, BC, CA); James Hodge, JD (Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA); Denise Hynes, RN, MPH, PhD (Edward Hines, Jr. VA Hospital, Hines, IL and University of Illinois, Chicago, IL, USA); J.B. Jones, PhD (Geisinger Health System, Danville, PA, USA); Claire Snyder, PhD (Johns Hopkins School of Medicine, Baltimore, MD, USA); John Wasson, MD (Dartmouth University, Hanover, NH, USA); Albert Wu, MD, MPH (Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA); Susan Yount, PhD (Northwestern University, Chicago, IL, USA); Brad Zebrack, PhD, MSW, MPH (University of Michigan, Ann Arbor, MI, USA).

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Snyder, C.F., Jensen, R., Courtin, S.O. et al. PatientViewpoint: a website for patient-reported outcomes assessment. Qual Life Res 18, 793–800 (2009). https://doi.org/10.1007/s11136-009-9497-8

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  • DOI: https://doi.org/10.1007/s11136-009-9497-8

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