Adventures in involving and engaging the public in human developmental biology research Free

We aim to generate and maintain trust in fundamental research by ensuring its potential impacts are considered relevant and mutually beneficial by wider society, which helps reduce the risk of unintentionally provoking backlash against the research. However, human developmental biology research creates an engagement paradox: people donate tissue to research in intimate and personal circumstances, but the research outcomes are often distant and undefined. The Human Developmental Biology Initiative (HDBI; www.hdbi.org) is a Wellcome-funded research consortium aiming to pioneer new approaches to answer fundamental questions about human development. One way to tackle this engagement paradox is through the Insights Group, part of our public engagement (PE) programme. The Insights Group is a patient and public involvement (PPI)-style panel of public stakeholders with relationships to tissue donation situations (abortion or fertility treatment). According to the UK Health Research Authority, PPI typically means that research is being done ‘with’ or ‘by’ the public, rather than ‘to’, ‘about’ or ‘for’ them (https://www.hra.nhs.uk/planning-and-improving-research/best-practice/public-involvement/). The Insights Group presents an ongoing opportunity for researchers to discuss their work with the public and the Group provides advice on how HDBI research is conducted and communicated. While PPI itself is not unique, we believe a PPI-inspired panel in the context of human developmental biology is highly unusual and noteworthy. Previously, we discussed the considerations and concerns in setting up this experimental group (Clements-Brod et al., 2022). Here, we review the accomplishments and challenges of the last 2.5 years of working with the Group and discuss the pros and cons of applying a PPI approach to fundamental research.

We initially recruited nine members to the Insights Group and it operates with the joint expectation of respect for all opinions and experiences and strict confidentiality (Fig. 1). These expectations were communicated to Group members on recruitment and reinforced by signing confidentiality and consent forms, which anyone who interacts with or observes the Group also must sign. The Insights Group was designed to have a long-term relationship with the HDBI consortium, which allowed Group members to become familiar with the broad research questions and scientific approaches of the consortium and for researchers to become accustomed with discussing their work with the public. In contrast to a typical PE event in which scientists discuss their research in a, usually, fleeting manner, the PPI approach is designed to elicit feedback and two-way interactions.

Meetings take place online for approximately 2 h, roughly every other month. They usually take the format of a brief researcher presentation followed by structured and unstructured discussion ranging from specific questions about the research presented, the overall scientific agenda, ethics and science communication. The second half of each meeting usually features a shorter conversation about HDBI-related PE projects. After each meeting, the Group members, researchers and professional services staff involved are all invited to complete reflection surveys online using both structured questions and free text. Anonymised feedback from these surveys has been used throughout this article. Since March 2022, 14 meetings have been held and 33 researchers and professional services staff have interacted with the Group or observed meetings.

Occasionally, Group members provide additional feedback between meetings, for example reviewing and providing written feedback on documents. When Group feedback has been sought on specific projects or questions, the PE manager follows up with researchers and professional services staff involved to determine what, if any, changes or decisions have been made as a result. This longer-term feedback is shared with the Group whenever possible in emails and follow-up meetings, which they find helpful, interesting and rewarding.

The PE manager role underpins all the Group's operations: working with researchers to determine expectations and prepare materials for sharing; facilitating meetings; and completing essential administrative tasks, such as scheduling and minuting meetings and conducting evaluation surveys. The PE manager reviews this feedback on an ongoing basis to inform plans for future meetings.

Most recently, feedback from the Group has led to changes in two patient information leaflets: one for tissue donation from abortion and one for early embryo donation from fertility patients. The Group have also contributed to researcher plans for developing a patient survey and information leaflet about vaccines. After one such interaction, a researcher commented, ‘We found it very useful to discuss [the survey and leaflet] with the Insights Group and I would recommend to a colleague in a similar situation to do the same. [They] definitely had opinions and views that we had not previously come across and it will be really useful going forward.’ The novel opinions of the Group in this interaction included the Group pointing out that links or QR codes to reputable sources for further information would be useful and appreciated. Additionally, emphasising the need for any images used to be diverse and broadly representative of the population to which they are intended to refer (Box 1). These interactions also highlight how fundamental researchers are frequently involved in projects which may impact people's day-to-day lives.

In addition, the Group have contributed to researcher training, both directly and indirectly. For example, they generated questions about human developmental biology research used in a ‘Frequently asked questions and plain English’ training session, in which the whole consortium was invited to participate. Researchers attempted to answer questions in ‘plain English’ during the session and their answers were reviewed and refined by the Insights Group and HDBI PE manager; this resource is freely available online (https://hdbi.org/faqs) and has been used by researchers both within and beyond the consortium (e.g. preparing for public interactions). The Group also provided a training opportunity for junior researchers to practice delivering flash talks as part of a friendly competition. In consultation with the HDBI PE manager, the Group provided advice for the researchers to follow in preparing their presentations and outlined the criteria by which the talks would be judged. Afterwards, the participating researchers received personalised feedback that could be applied to any future PE work. The researchers' main takeaways after this experience were focused on explaining why their work is important; the Group have repeatedly emphasised that highlighting the potential real-world applications of research, even if distant or unclear, is key to connecting with the public. Potential applications do not have to be clinical – they can be linked to changes in policy and advice, information that is available to the public, and how we communicate science more broadly. The Group has also influenced researcher thinking about how their work fits into wider society. After meeting with the Group, researchers have said, ‘...the ethics of biological research is not something that can be avoided in conversations with the public...’ and ‘...a larger discussion on consent...will be extremely beneficial for both us researchers and the larger public’. These quotes illustrate how the Group has strengthened the sense among researchers that their work is connected to the process of tissue donation. While researchers are not directly part of the tissue donation consent process, to maintain public trust in research they must be aware of the ethical considerations and regulations surrounding it and be sensitive to the sense of dignity afforded to the human tissues used in research.

More broadly, interacting with the Group has had an impact on researcher thinking, especially about how they communicate their work. For example, researchers have said, ‘...words that are innocuous to me can have emotive responses in others...’ and ‘I will pay much more attention to the words I use while explaining my project’. These quotes highlight changes to researcher thinking about communication on both a macro and micro level, affecting how they might tell the overall story of their research as well as the specific words that they use. Across all Insights Group meetings, we have frequently discussed specific words that researchers should consider carefully when presenting their work to the public (Box 1). They have highlighted words, such as ‘disease’, ‘disorder’ and ‘normal’, that can be particularly contentious when applied to developmental conditions, such as Down's Syndrome or autism. By being more mindful about language, we hope to influence the way researchers think about their work, and eventually (re)direct research questions. Additionally, even the act of preparing for meetings with the Group can be useful for developing communication skills and help researchers gain a broader perspective on their work. For example, after interacting with the Group a researcher said, ‘making the slides made me focus on…the “big questions” we are asking in our project…’. Indeed, most of the researchers and PE professionals surveyed after meeting with the Group reported they had enhanced their communication skills, learned something new about public attitudes towards their research and gained new perspectives on their research (Fig. 2).

Participating in the Insights Group has had impacts on the members themselves too. According to the interim evaluation, which consisted of three in-depth interviews conducted by an external evaluator, members described their main outcomes as learning more about human developmental biology – both the science and its regulation (Jenkins, 2023). This process has also increased trust in researchers, who the Group have observed are very conscious of the sensitive nature of their work, as well as its ethical, legal and social implications, illustrated by this quote from a Group member: ‘ …it's about connecting with people, connecting with researchers and knowing that they're doing it for the right reasons, not just for the progress of science, but for the progress of science along with being human’. Group members who participated in the interim evaluation interviews also felt that their experiences and opinions were valued by the researchers whom they had met.

In addition to discussing the broad HDBI science agenda, the Group has given general communication and public engagement advice to researchers (Box 1). The Insights Group has also contributed to specific public engagement projects, such as helping plan for a public dialogue on research with early human embryos and advising on accessibility for an art–science project that explored artistic, sociological and linguistic aspects of research with human fetal and embryonic tissues. Some members also participated in another art–science collaboration by taking part in additional conversations with researchers, a policy expert and an artist over the course of several months. The Group members appreciated that researchers see the embryos they work with as precious, influencing the name of the piece (‘Precious Cells’) and the way embryos are depicted in the artwork.

Establishing, maintaining and managing the Group requires a significant investment of time and resources on the part of the HDBI PE manager, including member recruitment and encouraging researchers to work with the Group. Each meeting also requires a significant time and effort for the researchers who interact with the Group, as well as for the members, who spend time reviewing documents and preparing for meetings. The HDBI PE manager frequently consults with researchers as they prepare presentations and other materials to share with the Group to help ensure they are pitched at an appropriate level and adapted for varying additional needs within the Group. Preparing for a successful interaction requires extra time and thought, as it is a different way of communicating than researchers are typically used to. Group members notice when researchers have not had time to prepare sufficiently for their interaction – these presentations are frequently described by members as being too complex or otherwise difficult to engage with.

While it might first appear that one of the main values of having a PPI group embedded in our project is that they develop some specialised knowledge about the research, allowing scientists to forgo conventions typical of PE (e.g. avoiding acronyms and scientific jargon), this has not been the case. Our Group has been exposed to the full range of HDBI research over the course of 2.5 years and they still ask researchers to avoid acronyms and jargon when meeting with them. The fact that the Group have not become expert in the science works to our advantage, because they are able to provide a genuinely public perspective, despite having been exposed to HDBI science many times over. This highlights the value of maintaining such a PPI-style panel as a permanent resource, which saves the time and effort of convening separate groups every time public input is sought for a project.

Only four of the original nine members remain. However, discussions continue to be robust and useful for researchers, and interesting for the members, too. Longer term, we plan to replace missing members and expand membership to include anyone interested in discussing human developmental biology research. While we strive to involve people from all backgrounds, we expect to face similar barriers to those experienced during the initial recruitment, such as the topic attracting people confident in discussing intellectually demanding content and with higher-than-average education.

The Group was established after the agenda for HDBI scientific and PE grants was decided. Therefore, there was limited scope for the Group to influence the direction of the research. However, as we understand it, this is the overarching aim of PPI-type engagement: to discuss fundamental research with the public and to take their feedback on board to ensure that the outcomes of research are considered relevant and mutually beneficial, and to maintain trust in research. Although this goal has been widely recognised as necessary since the Human Genome Project in the 1990s, it is often not implemented in fundamental research programmes (Zwart et al., 2014; Wilsdon and Willis, 2004; Singh, 2008), likely because of the way PE/involvement is often funded as an add-on to scientific funding instead of as a permanent standalone resource available for input during all phases of research, including during the grant application process. Another challenge is that research itself is often focused on very detailed scientific questions, which are intrinsically difficult to get public input on because they require a high degree of subject expertise to formulate. However, the public can advise on and validate the longer-term goals that the research contributes to. Notably, there is a current push for PPI-type engagement with fundamental research from UK funders, but access to PPI groups and the professional expertise to facilitate the interactions remains limited.

Of the 14 meetings held so far, only one involved a researcher who presented a potential project that had not yet been funded. While the Group asked varied and detailed questions about the research presented, the researcher reported that these questions would not have influenced the direction of the research. However, the interaction did encourage the researcher to consider how their programme could ultimately benefit a patient group. Although it might be difficult to advise directly on the specific scientific questions being asked, a public group, given the opportunity, would certainly be able to feed back on the ultimate aims of fundamental research, and help develop research materials (e.g. patient information leaflets for tissue donation) and dissemination plans. Having such a group as a permanent resource enables these types of interactions to take place with researchers who are expected and willing to participate.

Although interactions with the public may not directly or immediately lead to changes in research directions, these conversations can percolate in a researcher's mind, potentially influencing their work more gradually. This type of outcome is very hard, perhaps impossible, to measure especially with the largely short-term and project-based nature of funding for patient and public involvement and engagement and its evaluation. Additionally, as the idea of working with such a group is relatively new in the field of fundamental research, one of our goals in this experimental approach was simply to increase researchers' awareness and willingness to get input from members of the public. By involving early-career researchers in interactions with the Insights Group, we also aimed to encourage this way of thinking for future grant writers.

According to our external evaluation, which incorporated both researcher and PE professional experiences, the Insights Group has been highly effective in its impact on HDBI science communication (Jenkins, 2023). However, running the Group effectively does require either dedicated professional resource for both management and meeting facilitation, or significant researcher time to fulfil these roles, and the resources required for this are not available to many research programmes.

HDBI PE funding ends in February 2026 and, because working with the Group has been an overwhelmingly positive experience for the researchers, we are currently looking for a longer-term home for the Group amongst HDBI host institutions. If we can establish the Group as a permanent, longer-term resource for researchers, with a PE professional to manage the Group and facilitate interactions, we hope it can continue to influence how developmental biology is communicated and that, eventually, the Group's input can be incorporated into future research directions.

Meanwhile, we encourage others to consider a PPI-based approach to their own fundamental biology research. Although this type of engagement is unlikely to lead to insights on fundamental scientific questions about the nature of human development, feedback from a PPI-style group could validate, expand or even alter ideas about the ultimate aims of your research and that is worth considering.

We thank all of the Insights Group members for the fantastic discussions we have had over the last few years. The Insights Group was conceived by Leah Holmes. The Insights Group project was reviewed and approved by the University of Cambridge School of Humanities and Social Sciences Research Ethics Committee.