A call to action for more disability-inclusive health policy and systems research

被引:11
作者
Bailie, Jodie [1 ,2 ]
Fortune, Nicola [1 ,3 ]
Plunkett, Karleen [1 ]
Gordon, Julie [1 ]
Llewellyn, Gwynnyth [1 ,3 ]
机构
[1] Univ Sydney, Ctr Disabil Res & Policy, Sydney, NSW, Australia
[2] Univ Sydney, Univ Ctr Rural Hlth, Lismore, NSW, Australia
[3] Univ Melbourne, Ctr Res Excellence Disabil & Hlth, Melbourne, Vic, Australia
关键词
Health services research; Health systems; ABLEISM; PEOPLE;
D O I
10.1136/bmjgh-2022-011561
中图分类号
R1 [预防医学、卫生学];
学科分类号
1004 ; 120402 ;
摘要
To date, the exclusion of people with disability participating in research has limited the evidence base informing health system strengthening policy and practice more generally, and addressing disability-related inequalities in access to health services and better health outcomes more particularly. Given that more than 1 billion people, or 16% of the world's population, have a disability, we may fail to respond to the needs of a large proportion of the population unless we are purposeful with inclusion. Our research in this area indicates that online qualitative methods can be effective in engaging under-represented groups and are essential to ensure their input into health policy and systems research. This has important implications for researchers whose responsibility it is to make all health research disability inclusive, for ethical and methodological reasons, so they do not perpetuate the under-representation of people with disability in health policy and systems research. Our paper puts forward several recommendations to facilitate more people with disability participating in health policy and systems research. By critically reflecting on a health system strengthening research project, in which we purposefully aimed to support the participation of people with disability, we identify lessons learnt and issues to consider when planning and conducting accessible research. We also propose a set of actions for moving the agenda forward.
引用
收藏
页数:7
相关论文
共 58 条
[1]   Knowledge Of Practicing Physicians About Their Legal Obligations When Caring For Patients With Disability [J].
Agaronnik, Nicole D. ;
Pendo, Elizabeth ;
Campbell, Eric G. ;
Ressalam, Julie ;
Lezzoni, Lisa, I .
HEALTH AFFAIRS, 2019, 38 (04) :545-553
[2]  
Aidley D., 2021, Doing accessible social research: A practical guide
[3]   Using web conferencing to engage Aboriginal and Torres Strait Islander young people in research: a feasibility study [J].
Anderson, Kate ;
Gall, Alana ;
Butler, Tamara ;
Arley, Brian ;
Howard, Kirsten ;
Cass, Alan ;
Garvey, Gail .
BMC MEDICAL RESEARCH METHODOLOGY, 2021, 21 (01)
[4]  
[Anonymous], 2022, Global Report on Health Equity for Persons with Disabilities
[5]   Making everyone count: it is time to improve the visibility of people with disability in primary care [J].
Bailie, Jodie ;
Fortune, Nicola ;
Gordon, Julie ;
Madden, Richard C. ;
Llewellyn, Gwynnyth .
MEDICAL JOURNAL OF AUSTRALIA, 2022, 217 (04) :173-175
[6]   Introducing general practice enrolment in Australia: the devil is in the detail [J].
Bailie, Jodie ;
Laycock, Alison ;
Bailie, Ross S. .
MEDICAL JOURNAL OF AUSTRALIA, 2022, 216 (03) :158-158
[7]   Principles guiding ethical research in a collaboration to strengthen Indigenous primary healthcare in Australia: learning from experience [J].
Bailie, Jodie ;
Laycock, Alison Frances ;
Conte, Kathleen Parker ;
Matthews, Veronica ;
Peiris, David ;
Bailie, Ross Stewart ;
Abimbola, Seye ;
Passey, Megan Elizabeth ;
Cunningham, Frances Clare ;
Harkin, Kerryn ;
Bainbridge, Roxanne Gwendalyn .
BMJ GLOBAL HEALTH, 2021, 6 (01)
[8]   Adapting Disability Research Methods and Practices During the Covid-19 Pandemic: Experiences from the Field [J].
Banks, Lena Morgon ;
Willan, Samantha ;
Inglis-Jassiem, Gakeemah ;
Dunkle, Kristin ;
Ganle, John ;
Shakespeare, Tom ;
Khan, Rifat Shahpar ;
Hameed, Shaffa ;
Machisa, Mercilene ;
Watson, Nicholas ;
Carpenter, Bradley ;
Smythe, Tracey ;
Mthethwa, Nomfundo ;
Seketi, Queen ;
Wilbur, Jane ;
Nzuza, Ayanda ;
Ilkkursun, Zeynep ;
Tetali, Shailaja ;
Huq, Lopita ;
Clyde, Amanda ;
Hanass-Hancock, Jill .
IDS BULLETIN-INSTITUTE OF DEVELOPMENT STUDIES, 2022, 53 (03) :129-151
[9]  
Berghs M, 2016, Public Health Research, V4, P1, DOI [10.3310/phr04080, 10.3310/phr04080, DOI 10.3310/PHR04080]
[10]   A COVID-19-era rapid review: using Zoom and Skype for qualitative group research [J].
Boland, Joshua ;
Banks, Susan ;
Krabbe, Robin ;
Lawrence, Suanne ;
Murray, Therese ;
Henning, Terese ;
Vandenberg, Miriam .
PUBLIC HEALTH RESEARCH & PRACTICE, 2022, 32 (02)