As noted by @NathanK the Ministry has developed a Data and Information Strategy for Health and Disability:
Whilst ‘disability’ is mentioned 87 times, these occur as part of the ‘Health and disability’ expression . ‘Disabled’ however was mentioned 6 times, in the context of inequities in health outcomes as below:
Differences in health outcomes for Māori, Pacific peoples, disabled people in particular are both long-standing and well documented (p.14). Hence consultation identified “a clear focus on improving health outcomes, addressing health inequities (particularly for Māori, Pacific peoples and disabled people) and providing consumer-centred care” as important requirements in the context of the development of a data and information strategy for health and disability
Inequities in health outcomes are prevalent in many specific population groups within New Zealand, including Pacific peoples, disabled people and people living in poverty. We need robust, reliable and consistent data standards, collection methods, data quality and governance to address these inequities. One in four New Zealanders has a physical, sensory, learning, mental health or other impairment. The New Zealand Government has committed to collecting better data about disabled people and addressing health inequities between disabled and non-disabled people (p. 24).
I am keen to participate in discussions or actions that will broaden our understanding of:
What knowledge can we contribute to add to the picture so far
What data is important to collect, when and where?
How do we move the needle to make a real difference in outcomes for disabled people and their families?
@simon.ross Can you please point us to current actions or discussions about disabled people and families? Forum members, is this a topic of interest to discuss here? Thanks in advance!
Welcome aboard @KarenDay! Let’s get the discussion going. Does disability come up in your teaching at the University of Auckland?
I ask because I do a lot of work with parents raising children with disability. Our programmes are rooted in positive psychology strength-based approaches - an alternative to deficit based approaches which focus on what the children cannot do. In the process of coaching parents to take a more active role in their relationships with professionals, our pre-post measures show a statistically significant improvement in parental wellbeing, empowerment and hope. I’d be interested in connecting with colleagues who work with people with disabilities or their families…
That’s my intro, but I’d be interested in hearing about the experiences of other practitioners working in the disability sector or who have questions about data about our disabled population. Keen to hear about you!
In the 1980s in South Africa the Independent Living movement arrived there from the USA (response to the Vietnam war) and I became a disability rights activist. A lot has changed since then and a lot has stayed the same despite the changes in laws, international agreements, and general societal changes. Strengths-based approaches were introduced then and still need a lot of work.
I do encounter some students with disabilities and in our university we have a great policy about accessibility (published in 2022). The hard part is to implement the policies so that having a disability is just part of life. Simple things like responding to accessibility feedback from Canvas are less simple than one would think (involves getting to know the software in more than a superficial way, and time-poor academics can’t keep up, despite motivation and desire to be more accessible in their teaching).
Ongoing work…always.
Used to be a Physio and ran a service connected to this so know a little bit about the topic, but some of it will be dated.
Data I am aware of that touches this is:
InterRAI - for people over 65 delivered on the Momentum platform in NZ - data held by the former CentralTAS. Can from NASC (Needs Assessment Service Coordination) and has become over time a method for rationing care. @nigelmillarnz and Matthew Parsons have been involved for a long time.
A system known as Socrates which does NASC stuff is used in the under 65 space. Mostly is only for people who are eligible for services.
There is information on govt open data which relates to social services offered through MSD.
There is data from Enable who do long term equipment provision for part/most of NZ.
Thank you @KarenDay I can appreciate your interest in your students’ wellbeing. I know that the University of Auckland is keenly involved in accessibility and I am interested in joining conversations in that domain. Are you considering doing research in this area?
The Health Passport collection of lived experience is very interesting, because (from checking on the link you sent) it looks like it is provided on a voluntary basis by people, @jon_herries! Thanks for sharing your knowledge! Is the New Zealand Health Innovation Hub doing work in the disability space?
Of the systems you mentioned, InterRAI, Socrates, Enable and the MSD open data, are any of these accessible to researchers?
I attach a recent infographics comparing disabled people’s health outcomes to those of mainstream population, in case this is of use to HINZ members:
Thank you @Greig … I am also interested in what data science can add to this sector and potentially help uncover new trends. Please share if you have read relevant articles.
There is no “collection” of the health passport - it is only on paper so far (I have been wanting to get it digitised for a while).
The “DSS clients” in that pdf will be data from Socrates. All the others are subject to OIA so technically yes but I would use this form for the socrates data:
There may also be data held in the Medical Warning System and collected as part of the COVID response that might help identify disabled people for analysis like you show.
Thanks John for highlighting the role of the aged care assessment programme and InterRAI. I can perhaps clarify the programme.
InterRAI is a set of assessment protocols that are designed to create a reproducible picture of a persons functional abilities, living circumstances and thence to create a care plan aimed to intervene in areas where there are opportunities for improvement e.g. through rehabilitation and support services. The focus on the person and should include their goals and the things that are important to them. The assessment uses a dat set founded on extensive research over 30 years. All data items are assessed for validity and reliability. In Aotearoa the assessment data is stored and made available for future care events. THe data is also used by care providers to assess quality of service and can be used for other secondary purposes such as health planning and research where the person has given permission.
The purpose of assessment is not for the purposes of care rationing, but the assessment data can be used in a case mix system to inform funding decisions.
The InterRAI data is available for research and there is an active research network in New Zealand. There are also opportunities for international collaborative research because InterRAI is actively used in 35 countries, some of which have strong academic programmes of research.
The data does demonstrate that the use of residential care by Māori is much lower than comparable non-Maori.
@annickjanson this is something I am very interested in. At Family Planning we are in the process of changing the way we document clinical consults and we are moving to using NSOMED Codes. IN the past we have struggled to capture Disability in out client population.
As I am leading the project I went to the SNOMED Disability reference set and realised they are mainly diagnosis eg. Multiple sclerosis etc.
We had a think internally and realised that what is important to us in terms of disability are the ‘accommodations’ that may need to be made not the actual medical diagnosis. For example someone with autisim or alike may not want to be touched (which may make a consultation longer etc).
We want to be able to record accurate disability data to get to know our client population and ideally want to use SNOMED Codes.
I think your point is interesting Sarah and I agree - the diagnosis only part of the picture and this complexity is one which has been discussed here before - and I have brought it up in the discussion about international patient summaries. Your example illustrates this nicely:
Multiple Sclerosis (MS) - is a diagnosis and is a clinical diagnosis - which means a clinician, usually a neurologist determines this (ie. you don’t do a blood test like for Hepatitis or get a wrist x-ray that shows a fracture etc).
However MS manifests in many many ways, as the condition essentially can affect all parts of the brain (movement, sensation, cognition, mood etc.) and is episodic with remission as well where you can improve.
This means the symptoms of MS or the consequences of those symptoms can be much more important than the diagnosis itself. The question I still have is - who reports the symptoms?
I would argue the patient should do this themselves and control this (pain is a good example of this) as we can’t assume what is a symptom.
This discussion is framed in the medical model of disability, rather than the social model (where you’re not likely to find data codes because the existing coding systems are medical).
Good coding could support good data sharing among clinical professionals. Where disability exists, expertise is limited to certain clinical professionals and specialists. When the patient moves over to general practice or ends up in ED, the lack of appropriate data sharing could be life threatening. It would be good to see the sharing of good medical information about people with disabilities across orgs so that people don’t have to explain their needs to everyone they see. At least a baseline of good data for the new clinician to use as a platform could make life a lot easier for people with disabilities, and improve health outcomes.
This is an important point @KarenDay. Many of our legacy systems emerged together with the medical model: a physician asks us “Where is your pain”? “What is not working for you?”… Do you know of examples in the world where strengths of people have been coded in baseline data or during intervention?
The Omaha nursing coding system might offer some codes for this kind of thing. But it’s only used by nurses and one needs to have it in the doctors’ databases as well.
SNOMED might have potential to include this kind of coding. It might be worth contacting SNOMED to find out.
SNOMED has 20 codes for items such as social support status (by degree and including activities such administration of a social support questionnaire), a code for psychological resilience, 56 codes for self care, 60 codes for activities of daily living (tbf many are coding various assessments), 48 codes under the general heading of ‘spiritual’, etc
There are many localised subsets, I was one of many developing code sets for the New Zealand Ministry of Health, in my case working on developmental and general paediatric codesets.
I agree with you that if disabled people and their families could clearly see an outcome for including this information in data collection, this would make a big difference! Has family planning (or other organisations who participate in this forum) considered including some stories on their website to illustrate this point?
Summary pasted here:
The Disability Data and Evidence Working Group (DDEWG) comprises government officials, representatives from Disabled peoples’ Organisations and groups interested in disability research. The Group has a governance function overseeing the delivery of a work programme. The quarterly meetings are jointly chaired by the Office for Disability Issues and Statistics NZ. The work programme is managed by MSD as part of its support of the Disability Action Plan. The work programme includes workstreams on engagement, communication and resources; the IDI and Access to government; the outcomes framework of the NZ Disability Strategy and research.
The Disability Data and Evidence Working Group has a major focus on the types of data required to ensure the development of sound policy and appropriate services to meet the needs of disabled people in New Zealand and, thereby, improve their everyday lives.