Involving people affected by cancer in research: a review of literature

European Journal of Cancer Care
G HubbardE Donaghy

Abstract

The purpose of the literature review was to find out why people affected by cancer have been involved in research; how they have been involved and the impact of their involvement. We used systematic methods to search for literature, applied inclusion and exclusion criteria, conducted a quality appraisal, selected relevant data from the included articles for analysis, and provided a narrative summary of these data. The literature shows that people affected by cancer, particularly women with breast cancer, have been involved in a range of research programmes, projects and initiatives especially in the USA, UK, Canada and Australia. Their involvement has impacted upon research design, accrual and response rates. There is increasing recognition of the need for an infrastructure, including formal recruitment procedures, training and mentoring, to support an agenda of involvement and a need to challenge the ethos of traditional research, which does not easily lend itself to this agenda. Further critique of the role of 'experiential knowledge' in research is required so that researchers and people affected by cancer can work in partnership.

References

Aug 21, 1991·Journal of the National Cancer Institute·N Volkers
May 1, 1997·European Journal of Cancer : Official Journal for European Organization for Research and Treatment of Cancer (EORTC) [and] European Association for Cancer Research (EACR)·M Baum
Jan 1, 1997·Cancer Investigation·A S Langer
Apr 29, 1998·Cancer Investigation·B Zakarian
Feb 22, 2001·Journal of the National Cancer Institute·C McNeil
Apr 3, 2001·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Ross E. GrayCatherine Phillips
Jan 5, 2002·Seminars in Oncology Nursing·B Zebrack
Feb 7, 2002·European Journal of Cancer Care·C DavisS Redman
Mar 29, 2002·Environmental and Molecular Mutagenesis·Patricia PlummerRobert Millikan
Mar 29, 2002·Environmental and Molecular Mutagenesis·Janice H PlatnerMary D G Barker
Apr 27, 2002·Journal of Women's Health & Gender-based Medicine·Yvonne AndejeskiUNKNOWN U.S. Army Medical Research and Materiel Command Fiscal Year 1995 Breast Cancer Research Program Integration Panel
Jun 4, 2002·Public Health Reports·L BurhansstipanovL U Krebs
Aug 2, 2002·Journal of Women's Health & Gender-based Medicine·Yvonne AndejeskiIrene M Rich
Sep 26, 2002·European Journal of Cancer Care·Hazel Thornton
Nov 21, 2002·European Journal of Cancer : Official Journal for European Organization for Research and Treatment of Cancer (EORTC) [and] European Association for Cancer Research (EACR)·Michael BaumMartine Piccart
Dec 5, 2002·Seminars in Oncology Nursing·Nancy Davenport-EnnisEllen Stovall
Feb 27, 2003·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Tony StevensSam H Ahmedzai
Apr 18, 2003·BJU International·K Redmond
Feb 26, 2004·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Jo MarsdenUNKNOWN Lynda Jackson Macmillan Centre
Nov 25, 2004·International Journal of Health Services : Planning, Administration, Evaluation·Sabrina McCormickRuth Polk
Jan 5, 2005·Nature Reviews. Cancer·Deborah Collyar
Mar 8, 2005·Social Science & Medicine·N Khanlou, E Peter
Apr 2, 2005·Journal of Interprofessional Care·Marj PlumbMarion H E Kavanaugh-Lynch
Jan 27, 2006·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·David WrightClaire Foster

❮ Previous
Next ❯

Citations

Jan 20, 2015·Disability and Rehabilitation·Madeleine Harrison, Rebecca Palmer
Oct 30, 2010·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Phil CotterellKristina Staley
Jan 1, 2014·European Journal of Cancer Care·N Pattison, M Lee
May 7, 2010·Clinical and Translational Science·Nancy E HoodMary Ellen Wewers
Aug 21, 2009·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Christopher McKevittCharles Wolfe
Dec 12, 2013·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Felix GradingerJennie Popay
Jun 21, 2017·Current Rheumatology Reports·Clayon B HamiltonLinda C Li
Oct 28, 2017·Journal of Evaluation in Clinical Practice·Amy PriceAmanda Burls
Jun 19, 2010·International Journal of Palliative Nursing·David Ardron, Marilyn Kendall
Jan 12, 2019·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Maggie KillingtonMaria Crotty
Nov 1, 2018·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Kathrine Hoffmann PiiMary Jarden
Dec 9, 2008·International Journal of Palliative Nursing·Bridget JohnstonGill Hubbard
May 26, 2016·BMJ Open·Karin Piil, Mary Jarden
Jan 14, 2021·Health Expectations : an International Journal of Public Participation in Health Care and Health Policy·Albine MoserKon-Siong Jie
Jan 31, 2021·BMJ Open·George BoundoukiUNKNOWN Northwest Breast Research Collaborative

❮ Previous
Next ❯

Related Concepts

Trending Feeds

COVID-19

Coronaviruses encompass a large family of viruses that cause the common cold as well as more serious diseases, such as the ongoing outbreak of coronavirus disease 2019 (COVID-19; formally known as 2019-nCoV). Coronaviruses can spread from animals to humans; symptoms include fever, cough, shortness of breath, and breathing difficulties; in more severe cases, infection can lead to death. This feed covers recent research on COVID-19.

Blastomycosis

Blastomycosis fungal infections spread through inhaling Blastomyces dermatitidis spores. Discover the latest research on blastomycosis fungal infections here.

Nuclear Pore Complex in ALS/FTD

Alterations in nucleocytoplasmic transport, controlled by the nuclear pore complex, may be involved in the pathomechanism underlying multiple neurodegenerative diseases including Amyotrophic Lateral Sclerosis and Frontotemporal Dementia. Here is the latest research on the nuclear pore complex in ALS and FTD.

Applications of Molecular Barcoding

The concept of molecular barcoding is that each original DNA or RNA molecule is attached to a unique sequence barcode. Sequence reads having different barcodes represent different original molecules, while sequence reads having the same barcode are results of PCR duplication from one original molecule. Discover the latest research on molecular barcoding here.

Chronic Fatigue Syndrome

Chronic fatigue syndrome is a disease characterized by unexplained disabling fatigue; the pathology of which is incompletely understood. Discover the latest research on chronic fatigue syndrome here.

Evolution of Pluripotency

Pluripotency refers to the ability of a cell to develop into three primary germ cell layers of the embryo. This feed focuses on the mechanisms that underlie the evolution of pluripotency. Here is the latest research.

Position Effect Variegation

Position Effect Variagation occurs when a gene is inactivated due to its positioning near heterochromatic regions within a chromosome. Discover the latest research on Position Effect Variagation here.

STING Receptor Agonists

Stimulator of IFN genes (STING) are a group of transmembrane proteins that are involved in the induction of type I interferon that is important in the innate immune response. The stimulation of STING has been an active area of research in the treatment of cancer and infectious diseases. Here is the latest research on STING receptor agonists.

Microbicide

Microbicides are products that can be applied to vaginal or rectal mucosal surfaces with the goal of preventing, or at least significantly reducing, the transmission of sexually transmitted infections. Here is the latest research on microbicides.

Related Papers

Journal of Cancer Education : the Official Journal of the American Association for Cancer Education
Catherine J Brandon, Patricia B Mullan
Journal of General Internal Medicine
Leah KarlinerEliseo J Pérez-Stable
Journal of General Internal Medicine
Eric G PoonTroyen A Brennan
© 2022 Meta ULC. All rights reserved