Aboriginal Data Sovereignty & PROMs

1. What does PROMS data management look like?

In post no. 17 (over on the Rural Health Pro Platform), I talked about Aboriginal Data Sovereignty and Patient Reported Outcome Measures (PROM). In this post, I get a bit more involved with what that looks like.

As I researched for this post, I found some cool Vimeos about PROMs at https://apersu.ca/what-are-proms/

Ok, what’s PROM data management look like? Here’s a flow diagram from the NSW Cancer Institute (Fig. 1):

Fig. 1: NSW Cancer Institute – PROMS

Here’s my take on what happens when I rock-up to a health service for my heart health, and they:

  1. give me a PROM survey to complete, at different times, during my journey,
  2. the clinician checks-out my answers and says, “deary me, you’re a bit stressed! I wonder if the social worker can help out with that?”
  3. the clinician keeps my survey answers and other information on their record system,
  4. then I go the social worker to yarn about my noggin and they link me to the local Aboriginal Men’s Shed,
  5. at the next meeting with the clinician, I do another PROM survey and see how that compares to the first one,
  6. and that’s how it goes until my heart health journey is complete.

The clinician checks what PROM survey to use (there are different surveys), and they:

  1. look at the results, have a yarn with me about them, and hook me into relevant services where I need them,
  2. stick the PROM information into the computer so it can be kept for comparison,
  3. talk about my PROM to relevant staff in their organisation,
  4. shares my PROM to their team, and
  5. makes de-identified and aggregated reports about all the PROMs they receive.

The healthcare service/organisation like PROM data, and they:

  1. use all the PROM surveys to see how their patients are doing,
  2. collate the data together to see where improvements can be made,
  3. report on the data (de-identified, aggregated) to the Department of Health, which uses the information to support service improvement and funding models, and
  4. provide access to big data for research (subject to compliance guidelines, Fig. 2).

2. What about data sovereignty?

Righty-o, I can see the flow diagram (Fig. 1) and think about the survey process from different angles, and I’m confident about data security (Fig. 2), but what about Aboriginal data sovereignty?

Here’s some information to consider from the First Nations Information Governance Centre (Fig. 3):

Fig. 3: First Nations Information Governance Centre: https://fnigc.ca/

And see the Canada First Nations Data Governance Strategic Framework (Fig. 4):

Fig 4: First Nations Data Governance Strategic Framework

Do you think we should develop an Aboriginal Data Governance Strategic Framework for PROMs?

Let us know at ACI-PRM@health.nsw.gov.au to get in-touch with the PRMs Aboriginal Health Working Group:

  1. Email subject – PRMs Aboriginal Health Working Group
  2. 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)
  3. 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’ll talk about my upcoming talk at the 8th Rural and Remote Health Scientific Symposium .

Mark Lock

3. Australian article relevant to data sovereignty

Thurber, K. A., Thandrayen, J., Banks, E., Doery, K., Sedgwick, M., & Lovett, R. (2020). Strengths-based approaches for quantitative data analysis: A case study using the australian Longitudinal Study of Indigenous Children. SSM – Population Health, 12, 100637.

  • – ende –

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