Tim Magor, Head of the National Data Opt-out Programme, describes how the programme has worked with the voluntary sector to make sure information about people’s choice is accessible as possible.

Following on from recommendations made by the National Data Guardian for health and care a new national data opt-out was launched in May 2018. It provides a simple, accessible way for the public to opt out of their confidential patient information being used for research and planning.  

Working with the voluntary sector has enabled us to test and shape our approach to help ensure that information about the national data opt-out is accessible to everyone.

A public engagement plan

A public engagement plan has helped us work through and inform the steps we needed to take. Key to the development of this plan has been engagement with the voluntary sector who provided a significant amount of their time and advice. This began in October 2017 with a workshop including members of the Health and Wellbeing Alliance and other voluntary sector organisations. The aim was to begin to understand the needs of different groups, the challenges that some may face and how the programme could develop solutions.

Through an equality impact assessment and research with members of the public, we identified 16 groups that may have additional needs or who may face barriers to accessing information or making an opt-out choice. These groups include carers, people with sensory impairments, people with limited English and young people.

So that we could fully understand the needs of these groups we have engaged with the voluntary sector through webinars, individual conversations and focus groups and these conversations have guided our approach to engagement and accessibility. To date we have engaged with over fifty voluntary sector organisations representing different groups. And the list continues to grow.

Changes to the process of registering your data choice

Through these conversations we identified what resources and changes were needed. We heard early on that the requirement to enter a postcode to opt out online could be challenging for some groups, for example the homeless, Gypsy, Roma and Traveller communities and asylum seekers. We reviewed whether the postcode field could be removed from the process and found that it could.

We also heard that the need to provide proof of ID as part of the paper based route to opt-out would create a barrier for similar groups as well as the elderly. Older people are a group that we anticipated would be most likely to use the paper based route as it doesn’t require access to the internet, an email address or a mobile phone. As a result of this feedback we changed the paper based route so that a person can choose to use their NHS number as an alternative to providing copies of ID documents. We also included guidance to help people find their NHS number.

Being invited to participate in the National Data Opt-out Programme is really important. Pathway is the UK’s leading homeless healthcare charity. Our clients are often left behind and misinformed by processes which are meant to be inclusive but do not take into consideration logistical access or support. This venture aims to be wholly inclusive by addressing those areas and working closely with NHS England we are looking at ways in which those challenges can be met” – Stan Burridge, Pathway

Tailored resources for certain groups

We learnt that certain groups are more likely to opt-out than others, for example ethnic minorities and Roma, Gypsy and Traveller communities. This could increase the health inequalities that these groups already experience so we have worked with organisations representing these groups to understand the issues in more detail. This has helped us to provide the right information to them to be able to make an informed decision. This includes developing tailored resources for Black and Minority Ethnic groups and Roma, Gypsy and Traveller groups.

Black and minority ethnic communities are one of the most disadvantaged groups who experience health inequalities. It is important that these communities' concerns are heard in any developments that can affect their experiences of health. We are pleased to have been able to raise issues that might affect these groups and be involved in this work.” – Tracey Bignall, Race Equality Foundation

We heard that young people would have specific questions about when they could opt out themselves. Working with groups of young people through the NHS Youth Forum and the Youthwatch in Leeds we have developed a resource to meet their needs. This is available online and has been pro-actively distributed through relevant organisations.

Ensuring information is accessible

We have developed our handout in a range of accessible formats, including a selection of languages. We are also ensuring that our helpline is accessible by promoting the availability of the Next Generation Text Service (NGTS) and we will shortly be providing access to a translation service. The online service has also been tested to ensure it is accessible e.g. to make sure the content is screen reader compatible.

Sharing key messages

We continue to work with the voluntary sector to support us in getting messages out to different groups. We are also briefing Patient Participation Groups via the National Association of Patient Participation and local Healthwatch organisations across England so that they can share information locally. To further support voluntary sector organisations we have developed a resource for them which provides the background and signposting information they may need. 

What happens next?

We are continuing to listen and will make further changes if needed. We will also capture the lessons learned to make sure the information gained isn’t lost and can be used by other programmes.

We’d like to thank all the organisations who have supported us in this work. It is only through their expertise that we’ve been able to ensure our approach is right.

Resources to support patients, including the tailored and accessible materials, are available from NHS Digital.