Summary of Indigenous Informatics workshop

Fantastic first session of the indigenous Informatics group, this initiative was put forward and indeed chaired on the day by Tam Shepherd, HISA board member, Queensland Health senior executive and general ehealth guru, who felt that there was a piece missing in the eHealth conversations  – to understand the unique needs of delivering health informatics to the indigenous communities.

Today was an opportunity to meet others working in this space, to learn and share our experiences and find common themes we can pull together and create advocacy to drive change.

I was really impressed by the depth and breadth of knowledge of the participants of the workshop and most importantly the passion to create change and the commitment to work together to achieve this.

The day kicked off with a brilliant welcome to country to start things off on the right note, acknowledging the past and celebrating key events such as the apology from Kevin Rudd and the promise to close the gap – health is vital to making this happen.

The eHealth agenda is a national agenda, yet the indigenous agenda is different and isnt’ being addressed – identity, infrastructure and privacy are key issues that are unique to many of these communities

NBN – some of these communities don’t even have a road, or a reliable power source – so how will information flow here?

ICT support and ability to understand computers is vital – what happens when IT support isn’t just a floor away?

The stage was then handed over to Selwyn Button, CEO QAIHC  – Queensland Aboriginal and Islander Health Council presenting on their experiences in delivering Community controlled health services.

QAIHC’s primary role is to provide strategic policy and advocacy, member support services, as well as undertake negotiations with government.

Population demographics are different – younger, transient, higher burden of illness, need for social services, geographical spread, historical perception of where communities are most in need.

Service providers like employment, housing, education – all impact on health and need to work together to create meaningful change.

Comprehensive primary health care model – trialled and delivered by Apunipima Cape York health council through family centre approach to CPHC.

Set of primary care indicators based upon research to determine service needs, developed extraction tool to support service in data analysis and interpretation.

MIMASO – drug and alcohol client information system – developed by community controlled sector organisation, used in both community controlled and mainstream service sector.

Time spent on administrative tasks does not allow for being innovative and thinking to the future, too much time spent fighting fires, rather than clearing the path for future.

Some questions and comments from the audience:

Is the information being collected by the community groups to use as indicators available for people to use? – yes, you can look at the closing the gap website to get this information

In the wet season in the Kimberly, we have a shared system so when things get flooded we can rely on shared systems. This also was a big driver in uptake when people realised that having it electronically meant in floods or disasters they still had the data.

The group then broke into 4 to brainstorm what they felt the biggest barriers to uptake of eHealth or health informatics in indigenous affairs is, our group came up with some really strong comments that I felt could be applicable in all major ICT projects, change management, knowing what your use cases’s are and who your end users will be and developing not only the systems but understanding the drivers for adoption for them to not just use a system because they have to , but embrace and adopt it and want to be part of making it better.

We were then treated to some learning’s from the international community with Teresa Wall Deputy Director General, Maori Health Directorate from New Zealand, and talked about Ethnicity Data and the various cultural implications and the experience in New Zealand collecting information on ethnicity and reminding us that the context of how you ask for the data is just as important as what data you ask for.

Examples of how NZ moved from a blood quota to a multi choice – e.g you used to say I am half Maori, or quarter islander which led to a lot of identity issues, now people can tick as many or as few ethnicity groups as they choose to identify with.

Don Newsham, CEO of COACH Canada’s equivalent to HISA, “COACH is all about ensuring we have the professional people with the necessary skills and capabilities across Canada to actually make the EHR happen. So that, along with supporting the practice of health informatics, protecting privacy and guidelines and particular areas like that, COACH is really integral to the profession and the professional in HI in Canada.”
CEO Don Newsham

Don presented on the Canadian experience in Health informatics in particular with engaging with First Nation communities. I had to leave to attend a meeting so I was unable to hear the rest of his presentation, but you can see a brilliant talk from Don here

Finally we heard from the experience in our own country, the northern territory has had a lot of success with the rollout of their SEHR (shared ehealth record) and it was wonderful to hear from the team about their stories of success and challenges they faced.

We then came together to review the initial output fromt eh brainstorming where we looked at the barriers, and then analysed these in the view of what we had just learnt from the experiences of others in this space.

A few clear themes came out:

  • Collaboration – working together on a shared common vision and end goal
  • Connectivity the actual nuts and bolts of getting internet connections to communities
  • eHealth literacy – of both patients and providers
  • Information exchange – interoperability of systems to share the relevant information
  • Culture and change management – understanding the unique cultural needs of these communities and how that impacts not only in how we engage but also what we request – may lead to unique data sets.
  • Sustainability – need to make sure we are building a scalable solution for the future.

The group then workshopped some ideas for how to address these barriers and this will lead to a vision statement and initial overview for the group to work together to achieve.

All in all a brilliant first day and one I was very proud to be part of, excellent facilitation by Tam Shepherd and open warm positive environment for sharing and learning created by all attendees.

Here’s to a focus on indigenous Informatics and how it can improve the health outcomes for these communities.


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