A key challenge to a culturally safe survey for Aboriginal PROMs is the cultural validity of the survey.
As Co-chair of the ACI Aboriginal Health Working Group for Patient Reported Measures (PRMs), I get to meet awesome people and hear their cultural voices.
I met Prof Gail Garvey, a Kamilaroi woman from NSW (and who lived in Newcastle). Her team is developing Australia’s first culturally validated tool to measure wellbeing for Aboriginal and Torres Strait Islander people.
The project is called What Matters 2 Our Mob (see: https://whatmatters2ourmob.wordpress.com/).
Her team did a deadly literature review: Butler, T. L., Anderson, K., Garvey, G., Cunningham, J., Ratcliffe, J., Tong, A., Whop, L. J., Cass, A., Dickson, M., Howard, K., Aboriginal and Torres Strait Islander People’s domains of wellbeing: a comprehensive literature review, Social Science and Medicine (2019). https://www.sciencedirect.com/science/article/abs/pii/S0277953619303260
There are ‘nine broad interconnected wellbeing dimensions: autonomy, empowerment and recognition; family and community; culture, spirituality and identity; Country; basic needs; work, roles and responsibilities; education; physical health; and mental health.’
Ok, literature reviews are one thing but how does it translate into practice? There are other tools around right? Yes – see this massive spreadsheet: https://www.safetyandquality.gov.au/publications-and-resources/resource-library/patient-reported-outcome-measures-literature-review
Guess what? Those tools were not developed by engaging with First Nations Australians – our cultural voices are excluded from ‘mainstream’ patient survey tools. By definition and design, they are culturally dangerous. Thank goodness
Feel free to let the ACI know your cultural perspectives. Email ACI-PRM@health.nsw.gov.au to get in-touch with the PRMs Aboriginal Health Working Group: Email subject – PRMs Aboriginal Health Working Group:
- Email subject – PRMs Aboriginal Health Working Group Community of Interest meetings (this allows for opportunities to hear the voices of Aboriginal consumers and stakeholders in the development of the NSW Patient Reported Outcome Measures (PROMs) Program)
2. Email subject – Aboriginal PROM Trial and Evaluation group participation.
3. You can also subscribe to general PRMs newsletter and community of interest here: https://aci.health.nsw.gov.au/statewide-programs/prms/connect
In the next post, I’ll talk about the surveys from the Bureau of Health Information. Mark Lock