About the programme
In the team’s first blog post, Anne Watkins, Sian Thomas and Sarah Aston talked about the importance of user-centred design for the Digital Maternity Cymru programme.
The Digital Maternity Cymru programme, hosted by Digital Health and Care Wales, is developing a digital maternity service to support the delivery of safe and effective care for all women and birthing people in Wales.
One piece of work is to replace paper notes with digital versions that can be accessed on a device such as a smartphone or computer. This would allow clinical staff to access this vital data in whichever setting people attend. Women and birthing people would also no longer be responsible for bringing the single set of paper maternity notes with them wherever they go.
Moving from paper to digital systems can bring improvements in patient care, safety and service efficiencies. However, it can also bring the risk of digital exclusion for some who can’t, don’t know how or who won’t use online services.
Who are the ‘seldom heard voices’?
The term ‘seldom heard voices’ refers to “under-represented people who use or might potentially use [public] services and who are less likely to be heard by service professionals and decision-makers. These groups used to be described as hard to reach – suggesting that there is something that prevents their engagement with services. Seldom heard emphasises the responsibility of agencies to reach out to excluded people, ensuring that their voices can be heard.”
These are groups that tend to be marginalised by mainstream society. They include people who are Black, Asian or from an ethnic minority group and those who live with disabilities or who live in deprivation. They often experience prejudice and discrimination and possess protected characteristics.
They are less likely to be included in activities like the design of public services and can often be reluctant to engage in consultations which define government policies. This means their needs can be less well understood by the public sector organisations that serve them.
We know that people from marginalised groups are at a higher risk of health inequality. We also know that they are at a higher risk of digital exclusion. So, it felt important to create a digital service which would be inclusive of their needs. However, in our earlier research we had found it difficult to gather insight from people in these groups - it can be hard to encourage them to take part in activities such as user research.
When we began our discovery research, we decided that we wanted to talk to people who are at a higher risk of health inequality and/or digital exclusion. This would help us avoid creating a service which further discriminates or excludes people from an essential public service.
We focused on women and birthing people from the following groups:
- Black
- Asian
- Disabled people
- those living in deprivation
- those who don't have Welsh or English as their first language
Our approach
We began using a recommended technique when conducting research with marginalised communities and groups. ‘Snowball Sampling’ (Goodman, L,A 1961) establishes trusted networks in the communities you wish to research.
We started with our contacts across the maternity service and explained what we were trying to do. We had a rigorous approach to ethics and consent and made clear that we intended to champion the needs of those we were trying to reach. Once we had built those relationships and won their trust, they put us in touch with community midwives, doulas and charitable organisations in their areas. From there we were able to contact people and arrange their interviews.
Over 8 weeks, we contacted almost 60 people from 21 organisations – continuously building the network, it was worth the effort. We’ve included over 50 participants in research activities so far, and the network continues to provide us with people who want to be involved in our work.
It’s the right thing to do
Why go to such lengths to include under-represented and seldom heard groups in research? We believe it’s simply the right thing to do.
Actively including people from a diverse range of backgrounds, characteristics and abilities – helps reduce the risk that we unintentionally exclude people from the service they need to use. It’s also an effective way to create better products and services. Because when things work well for people at ‘the edges’ of our society such as those who have complex needs – they will also work well for everyone else.
Sue Tranka, Chief Nursing Officer for Wales agrees:
“We are committed in Wales to ensuring that the voices of all service users are heard to ensure equity in provision to address individual needs. I, as Chief Nursing Officer in Wales and as a woman from the global majority, understand the challenges and difficulties that stand in the way of all service users having an equal voice. I congratulate Digital Maternity Cymru on the work it is doing in reaching these voices to ensure they influence the next phase of this important programme. This will ensure that the recommendations truly take into account the views of all women, birthing people and their families to ensure we have a digital system that is fit for purpose. This will enable us to target measures to reduce health inequalities within maternity and neonates.
What's next
What have we discovered through this research? Our next blog post will share the findings.