Emmanuel Chan is one of our ARC NENC Practice Research Fellows. He is a clinical nurse specialist within the Deaf Services team at Tees, Esk, and Wear Valleys (TEWV) NHS Foundation Trust and has vast experience of delivering high-quality care to patients from diverse backgrounds.
His ARC NENC Practice Fellowship has enabled him to lead a project exploring deaf people’s experience of using digital healthcare technology in the North East and North Cumbria.
In this blog, he explains more about this work and why it is so important.
Can you tell us about your project and its background?
NHS England introduced the use of a wide range of digital and data technology, including remote care and online appointments, smartphone apps, and online self-help guides, during the Covid-19 pandemic, and the NHS Long term Plan aims to provide more healthcare services digitally.
However, we do not know a lot about deaf people’s experiences of these changes and the impacts on their health and wellbeing. We also do not know how best we can engage, consult and support them to manage those changes.
The project is important as it allows deaf people to tell us directly:
- What technology works and does not work for them
- What challenges or barriers they have about using digital and data technology and their access to health and care
- What providers can do differently in order to improve their experience.
This work has involved the design and development of the topics that were important to explore with deaf people – which deaf people themselves helped to shape.
It also included interviews with 11 deaf participants, where stories from the participants were video recorded and transcribed into text.
This allowed us to identify themes or patterns of meaning within deaf people’s experiences.
These interviews revealed four key themes that deaf people were most concerned about or interested in:
- Respecting deaf people and their individuals’ needs
- Facilitating deaf communities of interest, action and practice
- Creating supportive digital environments for deaf communities
- Personalising care for deaf people to optimise their independence and autonomy
Following on from this work, we set up a Deaf Experts by Experience group (DEEG) in 2023 with support from the ARC NENC Public Involvement and Community Engagement (PICE) lead, and arranged payment for DEEG members’ time and commitment – and this group now meets quarterly.
Everyone we spoke to was keen to be involved in research and service improvement, and many signed up as members of the deaf wellbeing network and/or DEEG in research.
Can you tell us about any initial findings?
The deaf people involved in this research found that sharing their personal stories had an impact on their awareness and acceptance of digital and data healthcare technology.
Their research involvement also highlighted a number of key areas of concern:
- A lack of awareness around communication and technology with deaf people, from healthcare staff was a key challenge.
- Frustration about a lack of provision of choices (in-person vs remote) and accessing care and information online (e.g. connectivity issues in hospital and at home, navigation of the online systems).
- Concerns with security and safety online and how they could be protected.
- Feeling disempowered that they had to rely on hearing people to speak up for them.
- Wanting to assert their own voice and take control of their life whilst their accessible information standard and reasonable adjustment requirements were met.
They also called for healthcare staff to be equipped with deaf awareness and relevant training and supported to change their practice.
Through this work, I now recognise the importance of:
- Involving and engaging deaf people at the beginning of any changes/transformation programmes.
- Respecting deaf people’s information and communication requirements and cultural identities.
By sharing the findings and observations, and through ongoing collaboration with deaf communities, I am hoping we will be able to:
- Facilitate a stronger voice from deaf communities in healthcare research and transformation.
- Develop better practice in accommodating deaf people’s needs in the use of digital/data healthcare technology.
- Highlight specific issues around using interpreters online and respecting people’s choice between in-person and remote care delivery.
- Create a framework to describe the elements that could enhance deaf people’s curiosity, promote their awareness and acceptance, and sustain their use of digital healthcare technology.
- Recommend a new strategy or organisational learning programme to promote awareness of deaf people and meet their accessibility and cultural requirements.
Can you tell us about what happens next?
I have already shared some preliminary findings with health and care professionals from HealthWatch, deaf organisations, and other national deaf mental health services – and will continue to share widely.
I am also a member of the NHS England NHS App Ambassadors forum and shared this deaf participant’s story (Paul’s Story) about the use of the NHS App – NHS App Case Study: Paul’s story – NHS England Digital
I would highly recommend reading Paul’s story and watching the video, as it offers some really important insights into what it is like to access and use digital NHS services as a deaf person.
I am hoping that this work will support the development of best practice guidance to substantiate the digital healthcare pathway documents for the NHS Trusts in the NENC.
I have recently been awarded a TOPOL Digital Fellowship from Health Education England (HEE) and am hoping to explore how patient portals will improve self- care and navigation in the care provided to communities of sensory impairment and neurodiversity in 2024/25.
I am pleased that the ARC NENC has agreed to continue funding the DEEG in research group so that I can stay involved in facilitating the in-person meetings quarterly. Hopefully more deaf people can be part of the research community and consider the opportunity as public contributors and peer researchers.
What have you found most valuable from this research fellowship opportunity?
The fellowship has enhanced my confidence in making connections with colleagues within the North East and North Cumbria and beyond. I have also learned more about research methodology and public patient involvement toolkits with deaf communities. It has also strengthened my determination to find further opportunities to look into the implementation of digital and data transformation within marginalised groups.
What has been the biggest challenge?
There were two key challenges during the project:
1) Time allocation – and how the commitment to research and clinical work could be rationalised.
2) The dual roles of practice and research could both be conflicting and complementing.
I would like to thank the ARC NENC for offering me the fellowship and the induction and training, improving my knowledge and skills in research and development, and expanding my connections within the region and beyond.
A report about this study is now being prepared and will be made available in near future.
If you would like to find out more about this work, please email emmanuel.chan@nhs.net
Image: NHS app on a smartphone – used with licence from Shutterstock