Bringing the public perspective into health data science
Patient and public involvement and engagement: from ideas to action
Health and social care research organisations increasingly recognise that the public voice is central to improving health and care. However, getting started with public and patient involvement and engagement (PPIE) can be daunting.
The Data Analytics team at the Health Foundation has a track record of using patient data to generate innovative research and analysis that tackles real-world problems. Over the past 18 months, we’ve been on a journey to develop and implement a public and patient involvement and engagement approach throughout our directorate’s work. It’s part of a wider strategy to make our work more open and collaborative, including making all our code repositories public.
The involvement and engagement of patients and the public has been rewarding and invaluable for both staff and participants. However, there have been challenges.
This blog aims to show how, despite initial trepidation and with lots of support, we turned an idea into action, transforming both the attitudes and landscape of public and patient involvement and engagement within our team. We describe our journey so far, before outlining our five top tips for other health and social care researchers wanting to get started.
Why does it matter?
What kickstarted our journey was a recognition that we have a moral and ethical imperative to engage those impacted by our research because services must meet their needs. The need to bring patient voices and perspectives into our work and reflect the rights-based vision of ‘no decision about me, without me’ became urgent.
There were practical and quality considerations making the work necessary too, such as the demand to eliminate ‘research waste’, and a need for sense-checking.
The key questions we needed patients and the public to answer were:
- Are we asking the right questions?
- Are we using the right methods?
- Are we interpreting the results in a meaningful way?
- Do our results reflect real world experiences?
Despite recognising that we needed to involve and engage patients, and having a clear desire to change, we lacked the knowledge, skills and experience to get started.
Where to start?
Realising we needed help to achieve our ambitious goals, the team enlisted Fiona McKenzie, an experienced consultant specialising in patient involvement and engagement. One of the first things Fiona did was to hold ‘hopes and fears’ sessions with the team. These sessions revealed that despite plenty of enthusiasm, there was also some apprehension and lack of confidence. These fears are not uncommon, as described in a 2019 qualitative study on health researchers’ experiences of patient and public involvement.
As a next step, Fiona paired us up with volunteer patients and members of the public to dispel some fears. Working with volunteer patient Lynn Laidlaw was very productive because as she says:
“Public and patient involvement and engagement is about conversations and developing relationships of mutual trust and respect. Public contributors are a vital critical friend to research and researchers. A colleague pointed out to me that to some researchers their research is like their baby and we sometimes tell them that their baby is ugly! Strong, honest relationships are essential for meaningful involvement and engagement to flourish.”
These conversations also helped us realise that acknowledging our fears (such as criticism) and challenges (such as capacity) is important so that they can be addressed, rather than ignored.
Following these initial patient-staff chats, with Fiona’s help we refined our desired outcomes for involvement and engagement work:
- Improve our research
- Support our directorate’s strategy by taking into account what matters to patients and the public
- Work to shape policy that improves health and care for communities
- Improve how we engage with patients and the public in the longer term
We then held two workshops, one with staff and another with a mixture of staff and patient-public representatives. Through these, our vision started to take shape. We settled on four underpinning key values that we wanted to embody throughout our work: partnership, respect, inclusivity and transparency. Each had associated principles.
Once we had our vision and values in place, a framework began to emerge. We named this our Guide to Action and it became our bible, helping us gradually navigate the world of involvement and engagement.
There was still lots more to be done but thankfully, Fiona agreed to continue working with us to embed the new framework across the directorate. On her advice, we set up a steering group to help develop processes, documentation and guide decision-making. Meanwhile, teams and team members dipped their toes in the waters of patient and public involvement and engagement.
First Steps
Our former data manager Richard Welpton, was one of the first. To better understand patient perspectives when applying to organisations such as NHS Digital for patient data, Richard assembled a panel of patients and members of the public. Together they reviewed two different data applications and Richard asked them a series of questions including:
- Are you satisfied that we’ve explained what we intend to do with the data?
- Do you have any concerns about how we’re going to use the data?
- Have we thought enough about how we’re going to publish the results?
This was followed by a group call to discuss patient concerns and feedback. Not only did he find working with the panel personally rewarding, but he achieved far more than he expected, gaining both a new perspective on the current task and insight for future work.
Throughout the project, the patients were enthusiastic; in addition to the tasks they were asked to complete, they often raised new ideas which we were not able to complete as part of this work. These ideas have been captured as future requirements.
Since this initial work, we have undertaken a range of activities, from simple one-to-one telephone conversations to larger, more complex multi-partner workshops and focus groups. We have involved over 60 patients and members of the public across 15 pieces of work, with more in the pipeline. Currently, this work is guided by our steering group but in the long term, we hope to establish a patient advisory group to develop the directorate’s approach.
Challenges and pitfalls
Although we’ve made huge progress, our journey has had its challenges. As Richard noted, meaningful involvement and engagement takes time and investment:
The work was probably more involved than I had originally anticipated; that is by no means a complaint! I enjoyed working with the patients and the many inputs they provided led to a successful completion of this task. I would be mindful of the exciting and interesting ideas that patients can generate and allow more time to consider these in future work.
Despite the great steps we’ve taken, a key risk is that we will miss important insights by not growing and diversifying our list of patient and public partners. The solution is not simple — it takes time to build trust and relationships with underrepresented communities. But we hope to constantly challenge ourselves to seek them out and share ideas and experiences within our partner networks.
Five lessons we’ve learned
The initial 6 months of implementing our framework underlined the value of the work and built enthusiasm, but also challenged us to think; how much more can we do? As activities spread across the team and capability grows, we are faced with a nice challenge; wanting to run while still learning how to walk.
Here are our top tips for getting started with involvement and engagement. We hope they help the process seem less daunting and you’ll be encouraged to take your all-important first step.
- Don’t be afraid to ask for help
When it comes to patient and public involvement and engagement, admitting you need help is a sign of strength, not weakness! — Lynn, patient advisor
Without the expert help of consultant Fiona, we would have spent far more time and resources trying to find the right ways to involve and engage.
2. Some involvement is better than none
And the earlier you can involve patients and the public in the research cycle, the better. It can be overwhelming and sometimes hard to know where to start, but don’t be afraid to start small. As our panel member Lynn says:
It doesn’t have to be perfect, it’s the intention and the values you embody that are important.
3. Use networks to seek out underrepresented voices
Do not expect these voices to come to you. Use networks, such as faith groups, to seek them out. There is no one-size-fits-all approach, and the way to do patient and public involvement and engagement depends on your organisation and the community it serves.
A mixed-methods approach is useful and can help you reach people who are underrepresented, and capture a variety of lived experiences. You will need to build trust. Engaging participants on their own terms, and fitting into their lives and schedules, can go some way to addressing this and allows for more meaningful involvement.
4. Take time to reflect and evaluate
Taking the first step is critical but so is taking the time to step back and learn from the journey itself. What went well? Where can you improve? What could you have done better?
And finally
5. Don’t underestimate the difference dedicated resources can make
Both research and administrative staff need time and resources to create a solid support structure for involvement and engagement activity. Without the time and resources that our team invested, there was a danger that meaningful patient and public involvement and engagement would be compromised, or valuable opportunities missed.
It’s also important to be honest: what do you hope to achieve with your activity, and what, realistically, can you achieve? It’s also important to acknowledge the emotional as well as the intellectual energy that is invested. As Lynn says:
Fundamentally, research is about hope.
For more information on any of the approaches mentioned, please visit our dedicated GitHub page; here you will find our Guide to Action, which explains our journey in more detail, as well as various involvement and engagement options.
We’d love to hear about your experience of incorporating patient voices and perspectives in health and care analytics. What challenges have you faced, and what lessons have you learned? Get in touch via twitter, or the comments below, and let us know.
This blog was written jointly by Olivia Ross-Hurst, who works in the Data Analytics team at the Health Foundation, and Lynn Laidlaw, who has worked alongside the team as a patient advisor since 2020.
