Summary of inaugural consumer health forum Aotearoa and participant feedback

Overview

The Health Quality & Safety Commission (the Commission) hosted the inaugural consumer health forum Aotearoa over two sessions on 24 November 2021. A total of 108 people took part. 

The day began with a karakia followed by a keynote speech from the Commission’s chief executive, Dr Janice Wilson. The audience then heard from Dr Chris Walsh, director of Partners in Care (the Commission’s consumer and whānau engagement programme), and assistant director Deon York about the impact of the health system reforms on consumer and whānau engagement, which drives the need for a consumer health forum.

Participants then went into virtual breakout rooms and had time for whakawhanaungatanga (introductions). Each group then addressed three main questions.

1. What do you think about the draft code of expectations (the code)?
2. To be successful, what does the consumer health forum Aotearoa need?
3. How do we ensure diverse and often unheard voices can contribute to the shaping of the health system?

The following is a summary of the forum’s breakout room discussions:

Discussion 1: The draft code of expectations

The draft code of expectations sets out how health entities and health providers share decision-making with, involve and work effectively in partnership with consumers and whānau. Feedback on the code is open until 31 March 2022. More information on the draft code is here.

Five main themes came out of the discussions with consumers on the draft code of expectations:

• wording
• accessibility
• the code in practice
• consumers and their networks
• education.

The idea of having a code of expectations was well received. Most discussion groups emphasised the importance of understanding how the code will work in practice. Below are a few quotes from the breakout sessions:

We need to ensure that Māori being co-designers of their care is clear and evident in the code.’

‘This bottom-up design is a welcome change from the status quo.’

‘Consumers appreciate the opportunity to drive this work.’

‘It is encouraging to see a code of expectations to be used at a systemic level.’

‘Consumers like the values within the draft.’

‘The reference to the articles of Te Tiriti o Waitangi and Wai 2575 were well received.’

Participants had some suggestions about wording changes, particularly in relation to using plain language throughout the code. They also suggested adding definitions and background information on terms such as ‘co-design’.

The discussions covered accessibility of the code. Making the code accessible to everyone in Aotearoa is a key priority for the Commission. Useful suggestions included providing the code in formats such as Braille and an audio recording, translating it into a range of languages and offering support to consumers with intellectual or learning disabilities.

How the code will be applied in practice was a major interest area. Discussions included questions about the code’s implementation, regulation and monitoring. Participants emphasised the need to recognise and resource the mahi of consumers. Some suggested that, because consumers in different locations have different needs, regional consumer representatives should help to set up and develop the new health entities.

Participants commented that some people may not be able to understand the code easily. Some also had concerns about how it aligns with other codes, including the Code of Health and Disability Services Consumers’ Rights. Participants suggested resources to help make the code user-friendly, such as ‘how to’ guides and examples of best practice. On the provider side of education, the discussion groups emphasised the importance of training decision-makers and clinicians on consumer and whānau engagement, including co-design.

Discussion 2: A successful consumer health forum Aotearoa

The discussion groups addressed the second question of what they thought a consumer forum needs to be successful. They provided great insights and suggestions, which ranged from the very practical to more aspirational goals.

Many want to see a well-organised and well-resourced forum where consumers can speak honestly and openly about their experiences in order to suggest solutions, add value and influence changes throughout the health system.

The participants saw a future consumer health forum Aotearoa that:

• could be a mechanism for nationalising the consumer voice during this era of major health system reforms
• would consist of consumers as well as whānau with lived experiences in a certain area of health who can speak or lead and provide advice as subject matter experts
• should also contain key decision-makers and clinical and medical staff
• could ‘pave the way’ for placing consumers at all levels of governance with the new health entities, including localities
• operated with transparency and aimed to ‘close the loop’ by feeding back information to consumers wherever possible
• had a membership that reflected the country’s diverse population and was shaped by the goal of reducing health inequities
• was agile enough to respond to both future population trends and emerging public health requirements.

Participants expressed interest in the forum being able to make connections across ministries, other Crown entities and the private health sector, particularly where issues of wider determinants of health such as housing, education or employment are involved.

Discussion 3: Diverse and often unheard voices contributing to the shape of the health system

Five main themes came out of the discussions about reaching unheard voices:

• communication
• messaging
• engagement and outreach
• resourcing
• changes at system and governance levels.

As with the previous question, themes ranged from practical steps, such as what types of media are best suited to certain populations, to solutions that involve more system-wide changes, such as an improved health literacy curriculum spanning years 1–13.

Frequently mentioned in the discussions were aspects of communication such as using a simplified communication style (plain language) and knowing the intended audience. identified useful questions to ask such as, 'What's important to you?', 'What are you worried about?', and 'What does your community suggest?'

Messaging was another area of communication that came up often. Here is some of what participants told us:

'It’s about encouraging and promoting the message that everyone can take part in making their voice heard.’

‘Food brings people together.’

‘Give the working poor a voice.’

‘Making your voice heard is a form of giving back to your community.’

‘Consulting with Māori benefits everyone.’

Another aspect of communication was about ‘closing the loop’. Participants indicated that hard-to-reach communities may participate more if they feel a sense of trust. Gaining that trust means consumers can access a clear and transparent process to make complaints and suggestions, and they can see their efforts leading to improvements.

Groups discussed at length guarantees of anonymity, respect and cultural safety. Many participants see these as foundational aspects that could lead those who are distrustful, hesitant or previously marginalised to engage with the reformed health system.

Some practical steps included: first engaging with community member representatives to bridge reciprocal relationships; having agreed terms of engagement; and embedding roles for consumers throughout the health system to share their experience.

Participants brainstormed communication avenues for reaching communities such as older people, rural populations, youth and non-English speakers. We are now exploring many of these avenues. 

The forum saw widespread support for the use of technology. However, participants also saw minimising the digital divide as a very important issue to address. Below are some practical ideas about connecting with hard-to-reach populations that came up during the discussions.

• Employ more community (primary and secondary) health ‘navigators’ and/or health coaches as a means of educating and engaging people in a service earlier before a health condition becomes serious and/or chronic. This approach in turn saves the health system money and time.
• Nationally resource our local champions. That is, have people on the ground networking, seeing new opportunities and reporting them back to the consumer health forum.
• Create a centralised database of local support networks.
• Train and employ advocates to work alongside a doctor and their patient to help with cultural safety and comprehension. This will help to improve the patient’s experiences, increase their engagement with the health care system and reduce barriers to engagement.
• Bring in community members to work for health and government organisations to establish mutual trust.

General health system comments and suggestions

We wanted to capture other concerns and suggestions participants shared. The comments below are not specifically related to the three main questions of the forum but are still relevant to the Commission’s work to put a consumer and whānau lens on quality improvements for the health system.

‘We need to be considerate of the fact that with the new change in the way that the health system is going to look, it would be key to have people in those localities as relationship managers.’

‘In Māori and Pacifica, in Asian cultures, it’s about the whole person, not just fixing one part of the body. The whole person needs to be thought about. There's a whole person that needs to be considered in a respectful way.’

‘Consumers want to see actual change/repercussions when there is wrongdoing; aged care complaints need to be resolved quicker.’

‘More training of health professionals about implicit bias is needed.’

‘We need a better complaints process for primary care.’

‘Clinicians need to put more value on those with lived experiences, not just a tick-box, but really listening and valuing their input.’

‘Advocacy for children and their whānau needs to improve.’

‘How will policies and strategies which work for a particular DHB be integrated nationally and continue working well for those regions?’

Lessons learnt

Overall, participants gave positive feedback on the format of the forum and how it was run.

The following are examples of feedback we received from the post-forum feedback survey.

‘It provided space for everyone to have a say through the breakouts.’

‘As with most if not all HQSC [Commission] forums/meetings, I found it respectful, inclusive, well run and validating.’

‘Appreciate organisation, seeking feedback. Appreciated the scribes/facilitators, awesome to connect with others and feel included.’

‘Not enough time to answer the questions posed, too much time taken feeding back when no comments can be made.’

‘Three hours was too long. Two hours is more manageable.’

‘Generally well run, I don't have any specific suggestions. Given the number of people/perspectives and the content covered, it was good.’

‘An evening session to allow those working to attend and a wider voice inclusion.’

The forum had capacity for 180 participants. We reached that capacity, and many more interested people were unable to register. However, we received many last-minute cancellations and unfortunately did not have enough time to offer these spots to any of the others who wanted to register. One lesson learnt on the day was to have a strategy in place to deal with the large number of late withdrawals.