IDEAS home Printed from https://ideas.repec.org/a/spr/patien/v5y2012i2p79-87.html
   My bibliography  Save this article

Patient and Public Involvement in Patient-Reported Outcome Measures

Author

Listed:
  • Sophie Staniszewska
  • Kirstie Haywood
  • Jo Brett
  • Liz Tutton

Abstract

This paper considers the potential for collaborative patient and public involvement in the development, application, evaluation, and interpretation of patient-reported outcome measures (PROMs). The development of PROMs has followed a well trodden methodological path, with patients contributing as research subjects to the content of many PROMs. This paper argues that the development of PROMs should embrace more collaborative forms of patient and public involvement with patients as research partners in the research process, not just as those individuals who are consulted or as subjects, from whom data are sourced, to ensure the acceptability, relevance, and quality of research. We consider the potential for patients to be involved in a much wider range of methodological activities in PROM development working in partnership with researchers, which we hope will promote paradigmal evolution rather than revolution. Copyright Adis Data Information BV 2012

Suggested Citation

  • Sophie Staniszewska & Kirstie Haywood & Jo Brett & Liz Tutton, 2012. "Patient and Public Involvement in Patient-Reported Outcome Measures," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 5(2), pages 79-87, June.
    • Handle: RePEc:spr:patien:v:5:y:2012:i:2:p:79-87
    DOI: 10.2165/11597150-000000000-00000
    as

    Download full text from publisher

    File URL: http://hdl.handle.net/10.2165/11597150-000000000-00000
    Download Restriction: Access to full text is restricted to subscribers.
    File URL: https://libkey.io/10.2165/11597150-000000000-00000?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    As the access to this document is restricted, you may want to search for a different version of it.

    References listed on IDEAS

    as
    1. Greenhalgh, Joanne & Long, Andrew F & Flynn, Rob, 2005. "The use of patient reported outcome measures in routine clinical practice: lack of impact or lack of theory?," Social Science & Medicine, Elsevier, vol. 60(4), pages 833-843, February.
    2. Ziebland, Sue & Fitzpatrick, Ray & Jenkinson, Crispin, 1993. "Tacit models of disability underlying health status instruments," Social Science & Medicine, Elsevier, vol. 37(1), pages 69-75, July.
    3. Cashman, S.B. & Adeky, S. & Allen III, A.J. & Corburn, J. & Israel, B.A. & Montaño, J. & Rafelito, A. & Rhodes, S.D. & Swanston, S. & Wallerstein, N. & Eng, E., 2008. "The power and the promise: Working with communities to analyze data, interpret findings, and get to outcomes," American Journal of Public Health, American Public Health Association, vol. 98(8), pages 1407-1417.
    Full references (including those not matched with items on IDEAS)

    Citations

    Citations are extracted by the CitEc Project, subscribe to its RSS feed for this item.
    as


    Cited by:

    1. Renly Lim & Lisa Kalisch Ellett & Elizabeth E. Roughead & Phaik Yeong Cheah & Nashwa Masnoon, 2021. "Patient-Reported Questionnaires to Identify Adverse Drug Reactions: A Systematic Review," IJERPH, MDPI, vol. 18(22), pages 1-17, November.
    2. Tabia Henry Akintobi & Payam Sheikhattari & Emma Shaffer & Christina L. Evans & Kathryn L. Braun & Angela U. Sy & Bibiana Mancera & Adriana Campa & Stephania T. Miller & Daniel Sarpong & Rhonda Hollid, 2021. "Community Engagement Practices at Research Centers in U.S. Minority Institutions: Priority Populations and Innovative Approaches to Advancing Health Disparities Research," IJERPH, MDPI, vol. 18(12), pages 1-14, June.
    3. Oliver Groene, 2012. "Patient and Public Involvement in Developing Patient-Reported Outcome Measures," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 5(2), pages 75-77, June.

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Kirstie L. Haywood & Roger Wilson & Sophie Staniszewska & Sam Salek, 2016. "Using PROMs in Healthcare: Who Should Be in the Driving Seat—Policy Makers, Health Professionals, Methodologists or Patients?," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 9(6), pages 495-498, December.
    2. Chengquan Li & Can Zhang, 2024. "Transformative Perspectives in Physical Education Evaluation: Empowering Diverse Stakeholders for Holistic Learning Experiences in the Era of Big Data," Journal of the Knowledge Economy, Springer;Portland International Center for Management of Engineering and Technology (PICMET), vol. 15(3), pages 13334-13360, September.
    3. Barbara L. Allen & Johanna Lees & Alison K. Cohen & Maxime Jeanjean, 2019. "Collaborative Workshops for Community Meaning-Making and Data Analyses: How Focus Groups Strengthen Data by Enhancing Understanding and Promoting Use," IJERPH, MDPI, vol. 16(18), pages 1-19, September.
    4. Mohamed Boucekine & Laurent Boyer & Karine Baumstarck & Aurelie Millier & Badih Ghattas & Pascal Auquier & Mondher Toumi, 2015. "Exploring the Response Shift Effect on the Quality of Life of Patients with Schizophrenia," Medical Decision Making, , vol. 35(3), pages 388-397, April.
    5. Greenhalgh, Joanne & Flynn, Rob & Long, Andrew F. & Tyson, Sarah, 2008. "Tacit and encoded knowledge in the use of standardised outcome measures in multidisciplinary team decision making: A case study of in-patient neurorehabilitation," Social Science & Medicine, Elsevier, vol. 67(1), pages 183-194, July.
    6. Rosalba Rosato & Silvia Testa & Antonio Bertolotto & Paolo Confalonieri & Francesco Patti & Alessandra Lugaresi & Maria Grazia Grasso & Anna Toscano & Andrea Giordano & Alessandra Solari, 2016. "Development of a Short Version of MSQOL-54 Using Factor Analysis and Item Response Theory," PLOS ONE, Public Library of Science, vol. 11(4), pages 1-15, April.
    7. Constantine E. Kontokosta, 2016. "The Quantified Community and Neighborhood Labs: A Framework for Computational Urban Science and Civic Technology Innovation," Journal of Urban Technology, Taylor & Francis Journals, vol. 23(4), pages 67-84, October.
    8. Ryan Petteway & Mahasin Mujahid & Amani Allen & Rachel Morello-Frosch, 2019. "Towards a People’s Social Epidemiology: Envisioning a More Inclusive and Equitable Future for Social Epi Research and Practice in the 21st Century," IJERPH, MDPI, vol. 16(20), pages 1-21, October.
    9. Tremblay, Melissa & Gokiert, Rebecca & Kingsley, Bethan & Mottershead, Karen & Pei, Jacqueline, 2020. "Using developmental evaluation and community-based participatory research to develop a model of supportive housing," Evaluation and Program Planning, Elsevier, vol. 82(C).
    10. A. Awad & Lakshmi Voruganti, 2012. "Measuring Quality of Life in Patients with Schizophrenia," PharmacoEconomics, Springer, vol. 30(3), pages 183-195, March.
    11. Pinto, R.M. & Rahman, R. & Williams, A., 2014. "Policy advocacy and leadership training for formerly incarcerated women: An empowerment evaluation of ReConnect, a program of the Women in Prison Project, Correctional Association of New York," Evaluation and Program Planning, Elsevier, vol. 47(C), pages 71-81.
    12. Garett Sansom & Philip Berke & Thomas McDonald & Eva Shipp & Jennifer Horney, 2016. "Confirming the Environmental Concerns of Community Members Utilizing Participatory-Based Research in the Houston Neighborhood of Manchester," IJERPH, MDPI, vol. 13(9), pages 1-12, August.
    13. Annie Madden & Max Hopwood & Joanne Neale & Carla Treloar, 2019. "Acceptability of Patient-Reported Outcome and Experience Measures for Hepatitis C Treatment Among People Who Use Drugs," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 12(2), pages 259-265, April.
    14. Wagemakers, Annemarie & Vaandrager, Lenneke & Koelen, Maria A. & Saan, Hans & Leeuwis, Cees, 2010. "Community health promotion: A framework to facilitate and evaluate supportive social environments for health," Evaluation and Program Planning, Elsevier, vol. 33(4), pages 428-435, November.
    15. Barbara Fallon & Joanne Filippelli & Tara Black & Nico Trocmé & Tonino Esposito, 2017. "How Can Data Drive Policy and Practice in Child Welfare? Making the Link in Canada," IJERPH, MDPI, vol. 14(10), pages 1-15, October.
    16. Erdem, Seda & Campbell, Danny & Thompson, Carl, 2014. "Elimination and selection by aspects in health choice experiments: Prioritising health service innovations," Journal of Health Economics, Elsevier, vol. 38(C), pages 10-22.
    17. Jae M. Sevelius & Orlando O. Harris & Lisa Bowleg, 2024. "Intersectional Mentorship in Academic Medicine: A Conceptual Review," IJERPH, MDPI, vol. 21(4), pages 1-11, April.
    18. Prasanthi Puvanachandra & Anthony Mugeere & Charles Ssemugabo & Olive Kobusingye & Margaret Peden, 2024. "Voices from the Ground: Community Perspectives on Preventing Unintentional Child Injuries in Low-Income Settings," IJERPH, MDPI, vol. 21(3), pages 1-15, February.
    19. Yining Xu & Xin Li & Zhihong Sun & Yang Song & Julien S. Baker & Yaodong Gu, 2021. "Adjusted Indirect and Mixed Comparisons of Interventions for the Patient-Reported Outcomes Measures (PROMs) of Disabled Adults: A Systematic Review and Network Meta-Analysis," IJERPH, MDPI, vol. 18(5), pages 1-29, March.
    20. Latrice C. Pichon & Terrinieka Williams Powell & Andrea Williams Stubbs & Nicole Becton-Odum & Siri Ogg & Trisha Arnold & Idia B. Thurston, 2020. "An Exploration of U.S. Southern Faith Leaders’ Perspectives of HIV Prevention, Sexuality, and Sexual Health Teachings," IJERPH, MDPI, vol. 17(16), pages 1-13, August.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:spr:patien:v:5:y:2012:i:2:p:79-87. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Sonal Shukla or Springer Nature Abstracting and Indexing (email available below). General contact details of provider: http://www.springer.com .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.