Previous studies of death and dying, and the role of hospices and palliative care, have found understanding among the public is mixed, with women and older people more commonly aware of the role of hospices (1). Lack of understanding can result in hospice care and community support being difficult to navigate (2), with hospice care underutilized, leading to calls for increased education and engagement (3, 4). Early conversations about death and dying are helpful in providing care and preparing for loss (5) but can be challenging conversations to have (2, 6, 7). In previous research conducted in the UK >75% of participants had some awareness/understanding around the role of hospices, but only half of these had a conversation about planning for their end-of-life (8). End-of-life care is increasingly focusing beyond professional settings, to family and “compassionate communities,” in promoting the wellbeing of dying, caring, and bereaved people (2, 9) therefore there may be increasing opportunities to engage and involve citizens in such conversations.

The emergence of citizen science has arguably favored a science framing, neglecting the significant potential it may have in other areas of research including patient and public involvement in health settings, and the potential of the technique for use within the social sciences.

To ascertain what is known about citizen science projects in these fields, we undertook a scoping review. Scoping reviews are helpful in determining whether a full systematic review is possible and aim to be transparent and systematic, but they do not operate with the same level of scope or assessment of quality (33). Two searches were conducted of the academic and grey literature in February 2020, including the terms “Citizen Science AND Health”, “Citizen Science AND Social Science” with search results then filtered and assessed for relevance. In the case of citizen science and health, references to environmental health were excluded. Editorials, commentaries excluding original data or projects, and letters in response to articles, were also excluded in both searches. The searches identified 23 relevant items located in the health search, and 10 in the social sciences search, including one item that appeared in both searches (Figure 1). The wider study in which this scoping review was conducted did not focus on assisted dying as a subject area. This topic was not excluded from the scoping review search criteria.

In summary, we found that there are emerging examples of projects taking place in both health and social science settings, which are utilizing a citizen science approach. Throughout the articles several key benefits and constraints in relation to citizen science were noted (Figure 2). These examples, and the literature resulting from them, suggests there are numerous opportunities to embed citizen science within a health or social science-based activity. These include citizen sciences potential to address societal needs, its benefits for participants and researchers, and applicability to situations that impact on our daily lives, making citizen science amenable to the context of research on death and dying.

For researchers, working on sensitive subject areas like death, dying, and end of life care, citizen sciences removal of lab-based and experimental settings provides opportunities to generate continuous data in real-life contexts, which could also include educative, therapeutic or supportive aspects for those participating (4). This may also mean such an approach can reach groups of people, who are otherwise underserved, for instance by working with communities when there are spiritual, social, or cultural variations in attitudes and practices toward death and dying, or encouraging men, for example, to engage in conversations around death and dying in gendered contexts (57).

Utilizing citizen science, including via social or digital media or community-based approaches, allows participants to contribute at times and in ways that are suited to their personal contexts, providing a level of empowerment and ownership, and also allowing citizens to shape and develop the approaches used. This may mean, in the right contexts, citizen science could work effectively around some of the most sensitive aspects of death and dying, for example the loss of infants and young children, or people who have died from suicide.

However, some of the benefits of citizen science in broader settings may not apply in the context of death and dying research. For example, digital and social media approaches may provide a sense of anonymity, which would be welcome for some participants and subject areas but feel impersonal or insensitive to others. This constraint may be particularly difficult given death and dying is a subject area where people already have a reluctance to share and converse (12). Similarly, while, citizen science works well in ‘everyday’ contexts and therefore offers benefits for integrating research on death and dying in social, community and family-based conversations, for those currently experiencing illness, the care of others, bereavement, or loss, it can already be a challenging and stressful time to seek to accommodate any kind of extra task.

There are clear constraints in citizen science, including considering ethical implications, the limitations of data, and appropriately recognizing the role of citizens in the research, which may be even more important around sensitive topics. Citizen science may not be well suited to such topics if the potential gain for those participating is unclear. Building trust would be essential and that would take time, and it would also be vital to ensure adequate support mechanisms were in place for the lived experiences and emotions that engagement on such topics can raise. From the researcher’s perspective this would require financial and time investment, to fully consider the ethical ramifications of a citizen science approach in this area and to make sure it was fully clear how any data was being used. One constraint which is arguably less applicable in the case of citizen science on death and dying is relevance, as the topic is relevant to all, but given the challenges in opening conversations in this area and indicating that relevance (12), creating uptake for such an activity, unless citizen led, would also require careful planning.

While our scoping review found that some projects and case studies included involved health conditions that could result in death and dying, it was evident there were no citizen science projects specifically focused on these topics, or end-of-life care at the time the review was undertaken. However, scoping reviews are limited in scope (33) and therefore further research would usefully ascertain the potential of a citizen science approach, as well as other public engagement techniques, in research on death and dying. To return to our original question, is there a role for citizen science in death and dying research, there is certainly potential, however any such approaches must proceed with time, care and compassion.

The original contributions presented in the study are included in the article/Supplementary material, further inquiries can be directed to the corresponding author.

The studies involving humans were approved by UWE Bristol University Ethics Committee. The studies were conducted in accordance with the local legislation and institutional requirements. Written informed consent for participation was not required from the participants or the participants’ legal guardians/next of kin in accordance with the national legislation and institutional requirements.

CW, AL, and CM contributed to conception and design of the research. CW conducted the initial scoping review and wrote the first draft of the manuscript. AL and CM contributed to the scoping review analysis. All authors contributed to manuscript revision, read, and approved the submitted version.

This work was supported by the College of Health, Science and Society, UWE Bristol.

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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