Public Interest Group on Cancer Research: a successful patient–researcher partnership in Newfoundland and Labrador

被引:2
|
作者
Savas S. [1 ,2 ,3 ]
Etchegary H. [3 ,4 ,5 ]
Stuckless T. [2 ,3 ,6 ]
Whitten C. [3 ,7 ]
Wiseman J. [3 ]
Bishop D. [3 ]
King J. [3 ]
Cutting J. [3 ]
Peddle D. [3 ]
机构
[1] Division of Biomedical Sciences, Faculty of Medicine, Memorial University, 300 Prince Philip Drive, Room 5M324, St. John’s, NL
[2] Discipline of Oncology, Faculty of Medicine, Memorial University, St. John’s, NL
[3] Public Interest Group on Cancer Research, St. John’s, NL
[4] Division of Community Health and Humanities, Faculty of Medicine, Memorial University, St. John’s, NL
[5] NLSUPPORT, Faculty of Medicine, Memorial University, St. John’s, NL
[6] Provincial Cancer Care Program, Eastern Health, St. John’s, NL
[7] Research and Innovation, Eastern Health, St. John’s, NL
关键词
Cancer; Caregivers; Diversity; EDI; Family members; Newfoundland and Labrador; Patient partners; Patient partnership; Patient-oriented research; Public engagement;
D O I
10.1186/s40900-022-00380-8
中图分类号
学科分类号
摘要
Background: Partnering with patients and family members affected by cancer is essential for meaningful research, public engagement and outreach, and advocacy activities. Objective: Our objective was to create a public interest group through an academic–community partnership focused on cancer research and public engagement. Methods: A purposeful recruitment process was implemented to ensure a diverse and inclusive group. The group meets virtually and communicates by email. The group’s activities focus on identifying the needs, priorities, and interests of cancer-affected individuals in the province; consultations; and designing research projects and public outreach activities together. Comprehensive meeting minutes are kept and used to distill discussion points. The work of the group is disseminated through a variety of channels. Results: The public interest group includes 12 cancer patient and family member representatives, in addition to researchers. Discussions by the interest group identified key themes related to: (1) equity issues and regional disparity in provincial oncocare; (2) information needs; (3) need for patient empowerment and public understanding; and (4) family member and partner needs and experiences. To date, the group has co-designed a cancer research proposal and a public engagement/outreach activity. The group also provides consultations on cancer-related projects/public engagement activities and members act as patient partners in specific research and public engagement proposals. The group evolves over time, and increasingly advocates on behalf of cancer patients and families. Retention and satisfaction of the public partners with group activities have been high. The group’s work and findings are disseminated to the Provincial Cancer Care Program, as well as to public and scientific stakeholders through local media, academic conferences and presentations, and a dedicated website. Conclusion: Public Interest Group on Cancer Research represents a highly successful patient–researcher partnership in oncology. It designs meaningful and patient-oriented studies and outreach activities in cancer. It also elevates and widely supports cancer patient and family voice. © 2022, The Author(s).
引用
收藏
相关论文
共 50 条
  • [41] Using patient-identifiable data for observational research and audit - Overprotection could damage the public interest
    Al-Shahi, R
    Warlow, C
    BMJ-BRITISH MEDICAL JOURNAL, 2000, 321 (7268): : 1031 - 1032
  • [42] Integrating Patient-Centred Research in the Canadian Cancer Trials Group
    Needham, J.
    Taylor, J.
    Nomikos, D.
    CURRENT ONCOLOGY, 2021, 28 (01) : 630 - 639
  • [43] De fining Patient Engagement in Research: Results of a Systematic Review and Analysis: Report of the ISPOR Patient -Centered Special Interest Group
    Harrington, Rachel L.
    Hanna, Maya L.
    Oehrlein, Elisabeth M.
    Camp, Rob
    Wheeler, Russell
    Cooblall, Clarissa
    Tesoro, Theresa
    Scott, Amie M.
    von Gizycki, Rainald
    Nguyen, Francis
    Hareendran, Asha
    Patrick, Donald L.
    Perfetto, Eleanor M.
    VALUE IN HEALTH, 2020, 23 (06) : 677 - 688
  • [44] DEFINITIONS FOR PATIENT ENGAGEMENT AND CENTEREDNESS IN HEALTH CARE RESEARCH AND PRACTICE: A SYSTEMATIC REVIEW BY THE ISPOR PATIENT CENTERED SPECIAL INTEREST GROUP
    Hanna, M. L.
    Oehrlein, E. M.
    Cooblall, C. A.
    Nguyen, F.
    Perfetto, E. M.
    VALUE IN HEALTH, 2016, 19 (03) : A296 - A296
  • [45] Endpoint and control group in prostate cancer screening research: public health basics
    Albertsen, Peter C.
    BJU INTERNATIONAL, 2024, 134 (02) : 315 - 315
  • [46] The ROS1 Cancer Model Project: A Unique Patient-Driven Partnership to Accelerate Research
    Moore, A. C.
    Goldman, L.
    Tomalia, T.
    Doebele, R. C.
    Lovly, C. M.
    Chiaverelli, R.
    Addario, T.
    Sable-Hunt, A.
    Addario, B.
    Freeman-Daily, J.
    JOURNAL OF THORACIC ONCOLOGY, 2020, 15 (02) : S32 - S32
  • [47] Patient and public involvement in cancer research: The needs and perceptions of older adults living with and after cancer
    Drury, A.
    O'Connell, L.
    O'Brien, A.
    Harkin, M.
    Rogers, L.
    ANNALS OF ONCOLOGY, 2022, 33 (07) : S1372 - S1372
  • [48] The Global ROS1 Initiative: A patient-researcher partnership generating open-source, oncogene-driven cancer models and data
    Freeman-Daily, Janet
    Goldman, Lisa
    Tomalia, Tori
    Lovly, Christine M.
    Patel, Manali I.
    Shaw, Alice T.
    Addario, Bonne J.
    Walia, Guneet
    Young, Steven W.
    Doebele, Robert C.
    CANCER RESEARCH, 2018, 78 (13)
  • [49] DESIGNING AN E-HEALTH PORTAL FOR THE PATIENT VOICE IN CANCER RESEARCH TO PROMOTE PUBLIC AND PATIENT INVOLVEMENT IN RESEARCH ACROSS ACADEMIC AND PATIENT COMMUNITIES
    Gordon, A.
    Hope, T.
    She, E. Ni
    Staunton, M.
    McCann, A.
    Quinn, E.
    IRISH JOURNAL OF MEDICAL SCIENCE, 2021, 190 (SUPPL 4) : S150 - S150
  • [50] Our reflections of Patient and Public Involvement in research as members of the European Working Group of People with Dementia
    Roberts, Chris
    Rochford-Brennan, Helen
    Goodrick, Jayne
    Gove, Dianne
    Diaz-Ponce, Ana
    Georges, Jean
    DEMENTIA-INTERNATIONAL JOURNAL OF SOCIAL RESEARCH AND PRACTICE, 2020, 19 (01): : 10 - 17