Aboriginal Patient Reported Outcome Measures – What are rural and remote perspectives? (post no. 13)

Presentation by Mr Sharif Bagnulo

In post no. 12, I talked about evaluation of the Aboriginal PROMs Proof-of-Concept Trials. In this post, I report on Mr Sharif Bagnulo’s brief presentation to the ACI Aboriginal Working Group for Patient Reported Measures (PRMs). Sharif spent 10 minutes with us on 27th July 2021.

1. The topic of Sharif’s talk was the NSW Rural Doctors Network use of the quality of life tool, HRQOL-WONCA, which charts “functional outcome measures from patients who access rural and Aboriginal outreach services across NSW”. The source article is, A systematic review of measurement tools of health and well-being for evaluating community-based interventions, and it’s boring as anything to read because it’s an academic paper.

2. The acronym HRQOL-WONCA = Health Related Quality of Life from the Dartmouth Co-operative Information Project/World Organization of National Colleges, Academies and Academic Associations of General Practices/Family Physicians Charts (HRQOL from COOP/WONCA Charts). Well, uh hmm, it’s not catchy.

3. Here are some interesting points about the HRQOL-WONCA:

  • Developed as a part of international collaboration based in Dartmouth Medical School in the USA
  • It is a picture-based tool where patients scores are linked to Likert scales
  • It is a general tool for quality of life and so lacks discrimination by disease condition
  • It has been used in multiple countries.

4. While health professionals use it in different countries by translating the words into another language:

Source: https://www.mayoclinicproceedings.org/article/S0025-6196(11)61395-5/fulltext

5. It looks like the fundamental basis of the HRQOL-WONCA does not include consideration of the value placed on wellbeing by different cultural groups, and certainly not the cultural values of First Nations Australians.

6. Side note: Interestingly, I found this commentary from the Rural Doctors Network: Capability … what’s in a word? Rural Doctors Network of New South Wales Australia is shifting to focus on the capability of rural health professionals, which talks about Amartya Sen’s Capability Approach— ‘describes the quality of life (or wellbeing) that individuals are able to achieve, and which is suggested aligns with the Aboriginal definition of health. However, the authors state, ”Further work needs to be undertaken to fully understand the impact of Aboriginal and Torres Strait Islander people’s connection to their homeland or country on their capabilities, achievement of functionings, and wellbeing and health34.”

And the little ‘34’ referred to this article: Sangha K, Brocque A, Costanza R, Cadet-James Y. Application of capability approach to assess the role of ecosystem services in the well-being of Indigenous AustraliansGlobal Ecology and Conservation 2015; 4: 445-458. This figure is awesome because it shows the connection to Country.

7. Ok, that was an aside. The point of Sharif’s talk was to let us know that the NSW Rural Doctors Network is actively investigating ways to measure patient wellbeing. Therefore, the ACI Aboriginal PRMs Working Group and the NSW RDN could yarn a bit more about how to connect.

8. Members of the NSW RDN are invited to the next Community of Interest group meeting on Friday 20th August 2021 (11-12:30), and email ACI-PRM@health.nsw.gov.au to register.

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)
  • Email subject – Aboriginal PROM Trial and Evaluation group participation.
  • 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 think it’s time to talk about Data Sovereignty and the Aboriginal PROMs

Cheers,

Mark Lock


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