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Background

Patients, members of the public and our PPIE lay leads have been integral to the BREATHE Hub since its formation. Through their unique perspectives, the BREATHE PPIE lay leads and Curiosity Group have helped to achieve one of the Hub’s central goals: to ensure that BREATHE health data are always used in a fair and transparent way, and for public benefit. Their contributions have been invaluable to many aspects of the work of the Hub and continue to influence our multi-sector relationships.

Members of the BREATHE Curiosity Group were recruited through open advertisements placed on the BREATHE website and other social media channels such as the BREATHE Twitter account, as well as through our links with other organisations including: the Edinburgh & Lothian PPI (Patient & Public Involvement) network, AUKCAR (Asthma UK Centre For Applied Research) PPI group, 51������ (Health Data Research UK) our Academic Partner PPI groups and our Charity Partners.

The recruitment process was developed in conjunction with BREATHE PPIE lay leads and offers three levels of involvement depending on individual’s interests and availability. (See figure 1).

Figure 1. Levels of Involvement

��This��tiered approach is adapted from an established model used by NHS Englandⁱ and helps representatives contribute to BREATHE in ways commensurate with their time, skills, capacity, and comfort, providing a setting to discuss sometimes sensitive issues and encourage high-quality discussions around their lived experience in relation to health data use. The Curiosity Group has attracted enthusiastic members combining diversity and enthusiasm, who have already had lively, novel discussions to influence BREATHE activity and strategy. (See Figures 2 and 3)

Figure 2. Curiosity Group Ethnicity

Figure 3. Curiosity Group Disability / Condition

How PPIE activities impact and influence BREATHEs projects and programmes of work from the outset

BREATHE directly aligns PPIE activities to all our multi-sector customers and ensures that our PPIE lay leads and or Curiosity Group are involved as early as possible with initiatives and projects central to the Hub’s long-term sustainability.

Whilst PPIE activity has been a present throughout BREATHE’s commercial projects, for the purposes of this Case Study, we focus attention on how the Curiosity Group has been engaged with BREATHE to ensure a significant project focussed on the generation of synthetic datasets has garnered the insight and ‘critical friendship’ it requires to land successfully for BREATHE, BREATHE Partners and potential customers.

BREATHE with the Curiosity Group co-hosted an event on the 16 December 2021 titled, Synthetic Data: What are they? How can they help respiratory health data research and how can patients and the public help inform their use? The event was attended by eleven members of the BREATHE Curiosity Group, the two BREATHE PPIE Lay Leads, PPIE members from SAIL (Secure Anonymised Information Linkage) and BREATHE staff. An overview of the BREATHE Hub was presented in accessible language by BREATHE Deputy Director Professor Jenni Quint (Imperial College, London), followed by an introduction to synthetic data and discussion on the opportunities and challenges these data pose, facilitated by Professor David Ford (University of Swansea).

For BREATHE—and potentially other 51������ Hubs—synthetic data offer a way of making our datasets and expertise more accessible to potential customers by replicating patient characteristics, but with a significantly lower governance threshold due to the enhanced privacy synthesised data provides. As documented in our Business Case and Appendix, synthetic data have a pivotal role to play in BREATHE’s long-term sustainability plans. BREATHE along with PIONEER Hub, plan to provide training workshops and guides to synthetic data for academic, small and medium-sized enterprises (SMEs) and industry customers, such as that of our UKRI award and thus we need to be aware, and abreast of, patient and public sentiments in relation to these type of data in relation to these kinds of initiatives. These materials will be shared with the Curiosity Group.

The outcome of the meeting recorded in Table 1 below, illustrates the impact of the Group on Hub strategy, communication, and programme structure:

Table 1: Impact log table

A primary area of feedback from our Curiosity Group in relation to BREATHE’s plans for the use of synthetic data focussed on suggestions for a more ‘user-friendly’ term than ‘synthetic data.’ This was an unanticipated area of concern but did resonate with known issues around a wider lack of understanding around what synthetic data is. This is similar to where health data science was 10-15 years ago with pseudonymised data. Input from the Curiosity Group has changed the way BREATHE talks about synthetic data. The following highlights how the topic was initially raised during the discussion:

Chair: “There’s probably a role for synthetic data in the conduct of health research using real-world data, but we’re unclear how we should treat it or what we should do with it.”

 

Lay 1: “Let’s do it for real. Just having that word…this is why people don’t trust the health care, ‘oh this is just synthetic.’ You’re trying to help but in a way you’re not helping. You’re just adding to the burden that we’re not understanding what’s going on behind the scenes. We need transparency. We need clarity. We need it to be genuine…. I know you’re trying to cut corners…we’ve tried in the past, and it hasn’t worked and that’s why we have hesitancy and that’s why we have communities saying we’re not doing what you want us to do.”

 

Chair: “Your observation that even the word ‘synthetic data’ might make people nervous is a really helpful one. We’ll have to work hard to think of an alternative…This is precisely the sort of feedback we want from you how this will play out in public…we can’t afford to get it wrong…and you are our experts in helping us understand a bit about what public opinion might feel like. This is great feedback. Thank you!”

This discussion led to lay attendees suggesting 11 alternative terms for ‘synthetic data’ which included: auxiliary; simulated; artificial; randomised; fiction; averaged; extracted and summary data. We explored these suggestions further after the session via a follow up evaluation form which was co-designed with input from lay members. Feedback included:

“If it’s (synthetic data) so widely used then perhaps the task should be to foster a wider understanding rather than invent a new term. I presume many of the users of that term will be outside your control so we cannot insist that they adopt new terminology”

In fact, the feedback provided at the December workshop has already been used by Diveplane, a BREATHE SME partner, to develop a short video explaining synthetic data to prospective users. This amplification of Curiosity Group feedback is ensuring BREATHE’s Industry Forum members, especially SMEs, take more person/patient-centric approaches to their business activities and communication.

The input from our Curiosity Group members will help us position our work using synthetic data carefully and precisely, will flow through to not just our own work, but also the UKRI funded synthetic data training for SMEs we are running in conjunction with fellow 51������ Data Hub PIONEER, in April this year.

How Curiosity Group members are involved in evaluating the effectiveness of PPIE activities and planning wider PPIE

Curiosity Group members evaluate the effectiveness of their activities in several ways, including evaluation forms (optionally anonymous) with outcomes summarised by the Hub’s secretariat and fed back to the Group, most recently via newsletters. The logged summary (above) of the synthetic data meeting provides an example. Wider PPIE is planned in conjunction with PPIE Lay Leads and discussions is led by Curiosity Group members.

The Hub then works to systematically embed all information, knowledge and material provided by our Curiosity Group across relevant aspects of BREATHE commercial projects.

Improving communication with and between Curiosity Group members

The recently published BREATHE Curiosity Group Newsletter Spring 2022 has been distributed among members. Our newly launched BREATHE website was developed in collaboration with Curiosity Group members—who will be approached to review forthcoming content. Increasing numbers and broadening membership and diversity of the Curiosity Group remain important goals for BREATHE in 2022. We intend to reach out to seldom heard voices of individuals as well as vulnerable groups under-represented elsewhere in PPIE work. To that end, BREATHE has recently introduced monthly “drop-in” sessions. These online drop-in sessions began in January 2022 and are a way of ‘on-boarding’ new Curiosity Group members, sharing our work and to discuss opportunities of becoming more involved with BREATHE.