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Extending the Shared Commitment through digital engagement

Published: 14 March 2024

Two years ago, the NIHR committed to strengthening our work with patients and the public, via the Shared Commitment. Since then, we have made huge strides in improving digital engagement, while also striving for inclusivity for those with limited technology access. Public contributors, Elizabeth Morrow, Jane Whitehurst and Phil Ruthen reflect on why this work is important, and what is still left to do.

Why is digital engagement important?

During the pandemic, using technology to stay connected became essential. This led to a widespread transition to online collaboration. This way of working has helped NIHR, and other key stakeholders, stay connected between face-to-face meetings and hybrid events. For example, the Shared Commitment first-year celebration.

We have witnessed much wider participation since the world transitioned towards hybrid working. We are now seeing people rarely seen before in patient and public involvement (PPI) meetings such as students, parents with young children, more people living with a disability and more diverse ethnic participation. Many comment that online working has given them the freedom to participate in a way they could never have envisioned in the past.

While we may remember the days of face-to-face meetings with nostalgia, there were still significant barriers. Short meetings that may have taken longer to travel to and from than the meeting itself. Finding a parking space at a busy university or public building. Complex journeys using public transport, requiring time and effort to plan and claim the expenses for (and being out of pocket in the interim). Trying to climb stairs whilst on crutches because the lift was broken. Having to walk long distances in the rain. None of these things will be missed!

The move to digital platforms has also enabled much more knowledge transfer from people who can now “drop in” to an online meeting for an hour in a way that would have been much more complex in the past. An increased emphasis on sharing and learning from each other is now a theme across many of the forums we are involved in.

What have we achieved so far?

On sharing and learning, one notable achievement since the launch of the Shared Commitment has been the collaborative effort to enhance the Learning for Involvement website. This involved public contributors, researchers, web designers and NIHR coordinators. The website was envisioned as the central repository for learning and development related to public partnerships. Recent work has made that vision a reality. 

Another achievement has been the increasing use of anonymised patient databases in research. The use of these datasets in research from the NIHR School of Primary Care Research has already demonstrated the value of ‘big data’ and its sensitive exploitation in providing new routes to patient benefit. 

What are the challenges of digital engagement?

In its relationship with the Shared Commitment, the NIHR draws upon and influences the public involvement debate, aiming to ensure a public voice in questions of ethics, proportionality, appropriate design and dissemination of findings in a fast-moving digital world. 

We need to keep equality and diversity at the forefront of design and analysis. This offers opportunities to correct past exclusions, and re-focus research toward patient need. Recognising current and past limitations, as well as immense opportunities, is equally important.

Amidst our progress, we should acknowledge the challenges of digital poverty and literacy. This includes access to technology such as laptops, the training required to use them and adequate connectivity. We still need to support individuals to access digital information through accessible formats. 

What’s next?

Research partners are now more able to make every contact count with public contributors like ourselves. We are now often involved in conversations on a wide range of topics, such as the UK Standards for Public Involvement, co-production, equality, diversity and inclusion and sharing of good practice.

Drawing insights from organisations like Shaping our Lives, efforts will be made to provide guidance and disseminate best practices in digital engagement, with a focus on bridging the digital divide and supporting those who face digital barriers to involvement. 

Through these initiatives, the NIHR and the Shared Commitment aim to foster meaningful engagement in all areas of health and social care research, while ensuring equitable participation for all stakeholders, regardless of their digital capabilities.

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