Hard-to-use digital tools and services can lead to exclusion, frustrations, and disengagement, which can negatively impact care. Useable tech, co-development and trust may appear to be separate factors but they are intertwined.
Our recent work into digital inclusion showed co-developing digital tools and services with communities and excluded people can help to make digital services more useable and, therefore, more inclusive. NHS and social care organisations cannot do this in isolation and with so much expertise already in communities, why should they? One effective approach to co-production is by building partnerships with voluntary and community sector (VCS) organisations to work with people that otherwise may not be engaged.
If people don’t have trust in digital systems, they are more likely to opt-out of their data being used to improve services, reducing the benefits of using data for improving outcomes and experience. Initiatives to improve patient trust and understand the public’s willingness to share data work well when time is taken to engage with communities in a structured way.
Trust is not important just for the use of data but also for public buy-in for the use of cutting-edge technologies such as AI. Recent research indicates the public’s trust in new technologies like AI is low. This is likely to mean that the public may be reluctant to use AI for health care and so the benefits to patients, staff and the system may be much slower than it otherwise could be.
Collaborations involving NHS staff and VCS organisations are a good way to bring people together and create a way forward. However, it takes specific skills and methodologies to undertake public engagement activities, such as citizens’ juries and public deliberations, and these skills are not common in health and care training. As we found in our research, some ICSs are increasing trust in digital services by regularly engaging with their communities on the topic of data-sharing to progress shared care records.
Creating useable services and tools, co-design and trust in health and care services are integral to the future of inclusive digitally enabled health and care services. These factors should be considered to be a human part of the digital infrastructure. However, the commonly accepted view of digital infrastructure is currently limited to the technology itself and does not include the human factors. If good design, co-development and trust are just as necessary as the technology, isn’t it time we reconsider what we mean by digital infrastructure to include these human factors as an essential component of good digital services?
Ignoring human factors and leaving them to be nice to have ignores these as necessary aspects of developing and implementing digitally enabled services. The recent failure to implement data collection and sharing for general practice (GPDPR) showed the NHS has challenges progressing public consent of data use on a national level, and the missteps result in increasing delays and unmet national commitments to improve and measure trust. However, we also see localised initiatives such as shared care records and population health management are better received by the public and professionals than national initiatives. National and local approaches working in tandem are needed.
In order to do this, we should expand our understanding of digital infrastructure to include the skills, methodologies, partnerships and approaches needed to co-develop services and work with the public to understand and meet their expectations on the use of data and technologies. But a redefinition is not sufficient to make change happen, there also needs to be a better understanding of what could the capability, capacity and skills look like to include a human part to digital infrastructure and what are the barriers or challenges? Further work is essential to answer this question and understand how to make the human part of digital infrastructure a reality and in doing so build trust and inclusive digital services.