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
  • [1] A patient–researcher partnership for rare cancer research
    Sophie Staniszewka
    Nature Medicine, 2020, 26 : 164 - 165
  • [2] A patient-researcher partnership for rare cancer research
    Staniszewka, Sophie
    NATURE MEDICINE, 2020, 26 (02) : 164 - 165
  • [3] Privacy protection and public goods: building a genetic database for health research in Newfoundland and Labrador
    Kosseim, Patricia
    Pullman, Daryl
    Perrot-Daley, Astrid
    Hodgkinson, Kathy
    Street, Catherine
    Rahman, Proton
    JOURNAL OF THE AMERICAN MEDICAL INFORMATICS ASSOCIATION, 2013, 20 (01) : 38 - 43
  • [4] Giving patients a voice: A participatory evaluation of patient engagement in Newfoundland and Labrador Health Research
    Vat L.E.
    Warren M.
    Goold S.
    Davidge E.(.
    Porter N.
    Schuitmaker-Warnaar T.J.
    Broerse J.E.W.
    Etchegary H.
    Research Involvement and Engagement, 6 (1)
  • [5] Charities call for "public-researcher partnership" in sharing electronic patient data
    Cooper, Lizy
    BRITISH MEDICAL JOURNAL, 2009, 338
  • [6] Partnership for Parkinson's disease research: Patient-researcher-clinician-sponsor
    Olden, K
    Guthrie, J
    Lawler, C
    NEUROTOXICOLOGY, 2002, 23 (4-5) : 451 - 456
  • [7] Patient and public partnership at BMJ Open Respiratory Research
    Chapman, Stephen J.
    Doble, Emma
    Fulton, Olivia
    BMJ OPEN RESPIRATORY RESEARCH, 2021, 8 (01)
  • [8] A SUCCESSFUL COMMUNITY PARTNERSHIP MODEL FOR RECRUITING PUBLIC HOUSING RESIDENTS INTO RESEARCH
    Battaglia, Tracy A.
    Rorie, Jo-Anna L.
    Primeau, Sarah W.
    Caron, Sarah E.
    Bhosrekar, Sarah G.
    Chen, Bing L.
    Bak, Sharon
    Thomas, Gerry
    Goodman, Rachel
    Smith, Eugenia
    Bowen, Deborah J.
    JOURNAL OF GENERAL INTERNAL MEDICINE, 2013, 28 : S8 - S9
  • [9] Toward a public outreach and community engagement strategy on cancer in Newfoundland and Labrador: an initial road map and recommendations
    Savas, Sevtap
    King, John
    King, Krista
    Etchegary, Holly
    Whitten, Cindy
    Wiseman, Jason
    Peddle, Darrell
    Bishop, Derrick
    JOURNAL OF PSYCHOSOCIAL ONCOLOGY RESEARCH AND PRACTICE, 2024, 6 (04):
  • [10] Patient and public involvement in doctoral research: Reflections and experiences of the PPI contributors and researcher
    Dawson S.
    Ruddock A.
    Parmar V.
    Morris R.
    Cheraghi-Sohi S.
    Giles S.
    Campbell S.
    Research Involvement and Engagement, 6 (1)