We ran a discussion table at the HINZ Leadership Summit, held in Wellington, NZ, on 5 and 6 September 2022. The event was attended by people from across the health sector in Aotearoa. Our topic was 'The Future of Whānau-centered Care Management'.
Our goal was to hear participant' thoughts on what whānau-centred care means to them, what the benefits of whānau-centred care are, what the barriers to implementation are, and what eventual solutions could look like.
To help structure the discussions, we divided the sessions into four main sections:
We felt that the kōrero over the course of the summit was valuable and engaging. Many participants had strong views and it is clearly a subject that some people care deeply about.
The concept of whānau-centric care can have different meanings, ranging from people an individual wants as support at a time of crisis to a household. Listening to people, my impression is that this has as much to do with context as personal opinion. Staff on a hospital ward managing the palliative care of a patient with attendant whānau have quite different concerns to a team working with a household to improve their housing situation. Ideally, a whānau-centric system would be able to support all relevant circumstances.
There seemed to be general agreement that better outcomes for people could be achieved with a whānau-centric approach, with acre seen as being more holistic in nature and people better empowered to help themselves and being more engaged in their care.
Privacy concerns and cultural inertia are certainly seen as barriers to implementation. It was also acknowledged that a broad move to whānau-centric care would also require a system-wide rethink, with whānau recognised as entities in their own right.
Ideally, technological system changes to meet the needs described would require a person/whānau poartl to allow people to securely view and control access to relevant records. Interoperability across the sector is also seen as important.
It would appear that a whānau-centric health sector would offer significant benefits, but implementation would not be trivial and wide implementation would require a measured and iterative approach.
We were struck, not only by the breadth of answers to the questions of what whānau is within the context of whānau-centred care, but also the depth of feeling attached to the answers. This is a subject that people feel passionate about!
There were three main categories of answers to this question:
It was also brought up that the definition of whānau could be any of these, depending on context.
What came through strongly was that many people saw their whānau as the people they want around them as support. People used terms such as:
Some people spoke of their whānau as being the people they lived with, who they identified as family. Participants referred to:
One's extended family was also seen as a definition of whānau, including hāpū and iwi. The genealogical component of health was brought up a few time. It was acknowledged that the definition here could vary depending on cultural background. Phrases included:
There was pretty strong consensus that whānau-centred care offered important benefits for people. The main themes included:
From the perspective of improved outcomes, people referred to taking a more holistic view of people's health, looking beyond presenting symptoms to include people's wider needs and environment. Examples of what participants said are:
It was felt that working with whānau would improve the ability of health workers to deliver care. Better informed decision making, support for interactions, opportunities for greater efficiency, and care planning were discussed. Some examples included:
Personal empowerment was a particularly strong theme in discussions. It was felt that it is important that people feel comfortable and in control of their care, that people should be enabled to help themselves, and that whānau should be worked with to come up with solutions. Common quotes from participants included:
Data was a less dominant theme in the discussions, but opportunities for better data capture were identified. Examples included:
As with the previous sections, a small number of core themes emerged when discussing barriers to implementation: The main topics included:
Concern about maintaining privacy rules was brought up consistently, with the main worry being a lack of clarity about what can be shared, and who decides what can be accessed. There was a feeling that policy will need to be updated to provide staff with the certainty they need to work in a whānau-centric way. Examples of comments made include:
Some of the conversations seemed to be less about whānau-centric care per se, and more about what an ideal health and social care ecosystem in Aotearoa could look like. The lack of interoperability was seen as a major barrier to efficient delivery of care. Some examples included:
It was acknowledged that for whānau-centric care to be possible, that systems would have to support that. Much of the commentary overlapped with concerns about privacy and consent, with it being necessary to separate the records of individuals from whānau records. Participant comments included:
Another barrier discussed at some length was cultural inertia, with a potential lack of buy-in or acceptance by both workers and people. Fear, distrust, and a lack of social acceptance were common themes. Some comments included:
A lack of funding to pay for required system changes and implementation was discussed. Examples included:
On the whole, participants had many clear ideas about what a whānau-centred care solution for Aotearoa could look like.
The ideas can be broken into six categories:
It was noted that for Aotearoa to work in a whānau-centric way, that data standards would have to updated to accommodate this. Suggestions included:
There was a strong message that, ideally, care should be provided in a coordinated way, with appropriate sharing of care and information between providers and systems:
Empowering people and whānau to easily and appropriately access their own records, provide and remove consent, and control who has access to their information. This would necessitate client/whānau apps. Suggestions that summarise the conversations include:
Participants in the conversations had many ideas of what a whānau-centric system should look like. Examples included:
It was suggested that mandated national level guidance and policies will be necessary.
It was acknowledged that the design process is important, with co-design seen as being particularly important. Key comments included: