Cancer survival stories: Perception, creation, and potential use case

Abstract Background Cancer patients often search for information about their health conditions online. Cancer patient narratives have established themselves as a way of providing information and education but also as an effective approach to improving coping with the disease. Objective We investigated how people affected by cancer perceive cancer patient narratives and whether such stories can potentially improve coping during their own cancer journeys. Additionally, we reflected on whether our co‐creative citizen science approach can contribute to gaining knowledge about cancer survival stories and providing peer support. Design, Setting and Stakeholders We applied a co‐creative citizen science approach by using quantitative and qualitative research methods with stakeholders (i.e., cancer patients, their relatives, friends and health professionals). Main Outcome Measures Understandability and perceived benefits of cancer survival stories, coping, emotional reactions to the stories and helpful characteristics of the stories. Results Cancer survival stories were considered intelligible and beneficial, and they potentially support positive emotions and coping in people affected by cancer. Together with the stakeholders, we identified four main characteristics that evoked positive emotions and that were considered especially helpful: (1) positive attitudes towards life, (2) encouraging cancer journeys, (3) individual coping strategies for everyday challenges and (4) openly shared vulnerabilities. Conclusions Cancer survival stories potentially support positive emotions and coping in people affected by cancer. A citizen science approach is suitable for identifying relevant characteristics of cancer survival stories and may become a helpful educational peer support resource for people coping with cancer. Patient or Public Contributions We adopted a co‐creative citizen science approach, wherein citizens and researchers were equally involved throughout the entire project.


| BACKGROUND
According to a recent press release by the World Health Organization, there were 19.3 million new cancer cases worldwide in 2020. 1 These data indicate that one in five people will develop cancer at some point in their lives. Moreover, with an increasing number of effective cancer therapies, the number of cancer survivors (i.e., cancer patients after 5 years of their cancer diagnosis) has been steadily increasing. For example, in 2020, the number of cancer survivors was approximately 50.6 million people. 1 With this number of cancer survivors, there is a growing awareness of the need for supportive care in cancer care, especially after cancer treatment.
Specifically, there are concerns about both, high healthcare costs caused by cancer, and more importantly, the cognitive, physical, emotional and spiritual burdens on the quality of life, productivity and social participation of cancer survivors. 2,3 Currently, patients search for information about their health condition in a variety of ways, including on the internet, online platforms and social media. 4,5 Patient narratives have established themselves as a way of providing information and education, as well as an effective approach to improving coping with the disease. 6-10 An example of an online platform is the Dipex charity. 5,11 Such platforms have also been established for cancer patients. [12][13][14][15] In this article, we refer to such cancer patients' narratives as 'cancer survival stories'. Here, the term survival refers to ways of coping during the cancer journey and not to the survival rates of people with cancer. Drewniak and colleagues 16 have provided a systematic review of the risks and benefits of web-based patient narratives, wherein they concluded that they are overall supportive; however, they are also challenging to quantitatively measure. To date, patient narratives have been predominantly investigated by applying qualitative research methods. 5,9,17 It has been shown that cancer survival stories can effectively inform and educate patients about possible treatments. 8,16,18,19 An important underlying concept is a peer-to-peer concept, where peers are educated to support people affected by cancer based on a trustful relationship and high credibility. 20,21 Furthermore, cancer survival stories can help patients to better cope with psychological challenges due to cancer, although coping is a complex construct to measure. 4,16,22 The storytellers' narratives add a personal twist to the content. Compared to impersonal information, cancer survival stories may also elicit stronger positive (as well as negative) affective responses from patients. 4,23 There are significant reasons to use a citizen science approach in health research. The prioritization of the patients' values and needs is incorporated into the concept of evidence-based medicine 24 and has led to the development of increasingly participative approaches in health research. 25 According to the principles of Citizen Science, 20 the stakeholders should at the very least have a say and in the best case a right to participate in developing the research process, conducting the analysis, and coauthoring the publication of the results. [25][26][27][28][29][30] Specifically, health research should incorporate the priorities, values and needs of those individuals affected by a health condition. Citizen science is a suitable approach to apply this claim in practice. [25][26][27][28][29][30][31] With our study, we wanted to contribute to the existing research about cancer narratives by exploring the perception of such narratives with a highly participative citizen science methodological approach. Therefore, we did not assess clinical outcomes, which could be a focus of an upcoming study based on the findings of this study.
The 'My Survival Story' Foundation produces personal narratives of cancer survivors throughout the world and with different types of cancers. The stories are shared online for free in the form of videos and podcasts. 32 The videos range in length between 3 and 5 min, whereas the podcasts range in length between 15 and 20 min. Most of the stories are in English, and a few stories are in Spanish, Swiss German and Japanese, with all of the stories having English subtitles.
In this article, we refer to the stories of the My Survival Story Foundation as 'my survival stories'.

| Co-creative citizen science approach
We applied a co-creative participative citizen science approach by using quantitative and qualitative research methods in 2020. [28][29][30]33,34 Our approach followed the 10 principles described by the European Citizen Science Association 28 (see Table 1). In addition, we followed the typology of Shirk and colleagues by defining 'co-creative' as the degree of citizen participation in our project, 30 meaning that at least some citizens are equally involved and responsible as the researchers in every step of the research project.
A core team consisting of one member from the My Survival Story Foundation (Martin Inderbitzin, Citizen) and two members from the University Hospital Zurich (Claudia Canella and Jürgen Barth, researchers) were equally involved during the entire research process. In addition, different stakeholders (health professionals, cancer survivors, relatives and friends) actively participated in the project. An external process moderator supported the whole research process fostering a constructive and power-balanced collaboration between all stakeholders and the research team.
We used a quantitative online survey to assess the understandability, perceived benefits, emotional reactions to the 'my survival stories' and if they are perceived as supportive by a broad range of stakeholders. In parallel, we engaged stakeholders in semistructured qualitative online interviews (find the interview guidelines in Supporting Information: Appendix 1) and in an online co-creative stakeholder workshop (see Table 1, for an overview of the citizen science approach). Both the interviews and the workshop were video

| Online survey
The aim of the online survey was the evaluation of the videos and podcasts of the My Survival Story platform by different stakeholders.
We recruited participants via the Institute's website and newsletter, as well as via the My Survival Story website, newsletter and social media channels. The stakeholders were eligible if they were cancer patients independent of disease status and treatment, cancer survivors or relatives or friends of cancer patients. All participants received similar information in the initial advertisement of the study to become enroled in the survey (via newsletter, Facebook, etc.) and received within the survey additional information about the aim of the project. Data were electronically collected between August and November 2020 via an online survey (SoSci Survey). Within this survey, the stakeholders were allocated to one specific media but had the opportunity to rate more than one if they opted in for another round of the evaluation. The stakeholders were randomly assigned to 1 out of 12 videos or 1 out of 8 podcast episodes.
As baseline data, we assessed sociodemographic variables (e.g., age, gender, cancer diagnosis, year of diagnosis, treatment status vs. relationship to a cancer patient and country of origin) and information media consumption (e.g., being alone while watching media and the device that was used). As outcome data, the evaluation of media encompassed the following four dimensions: the understandability of the media, the perceived benefits (for themselves and for others), coping with difficulties associated with cancer and emotional reactions to the story (relaxed, positive and negative emotions).
Descriptive statistics (e.g., numbers and percentages for categorical and dichotomous variables; means and standard deviations for continuous variables) are reported for the baseline (i.e., sociodemographics, clinical information) and outcome data (i.e., evaluation of the media). The analyses were conducted for all media and stratified according to media and user characteristics (i.e., video vs. podcast, patient vs. relative/friend and match vs. mismatch with the protagonist's gender). All of the analyses were performed by using IBM SPSS 26. All of the analyses were conducted with original data, and missing values were not imputed because the number of missing data per item was very low (<5%).

| Qualitative participatory process
In the qualitative participatory process, we followed the method of rapid qualitative evaluation, 36,37 which we applied to the interviews and the stakeholder workshop. For recruitment, we used a purposive sampling strategy 38 and recruited patients via the My Survival Story website, newsletter and social media channels. We searched for cancer health professionals, cancer survivors, relatives and friends who were willing to actively engage with the 'my survival stories' and engage with their own narratives in a workshop. During recruitment, we prioritized cancer survivors and relatives over health professionals and other representatives, for example, of patient organizations, NGOs, the health industry and politics, because we considered the former as key stakeholders in experiencing the narratives. We included cancer survivors independent of cancer type, disease status and treatment. Furthermore, we aimed at collecting saturated data, that is, a broad spectrum of reported experiences, regarding the CANELLA ET AL. | 1553 evaluation of content, the setting of the 'my survival stories' and the expressed relations to the specific situations. We were limited in the recruitment process due to the COVID-19 pandemic and the duration of the study. 36,38 The first author (Claudia Canella) created the interview guidelines (find them in Supporting Information: Appendix 1) and conducted the interviews. She is a trained qualitative researcher with 20 years of experience; that is, she conducted and analyzed interviews with about 300 people affected by cancer in the last decade.
To analyze the qualitative data, we used MAXQDA Software (Release 18.2.4) and followed the method of rapid qualitative evaluation 36,37 by writing research diaries, using spreadsheets to maintain the overview of the data and summarizing the interviews and the workshops. We linked each paragraph of these summaries to the according video recordings and transcribed partially the key statements. We identified the main themes related to our research questions by inductively collapsing all the data from the research diaries, spreadsheets, summaries, videos and transcripts. 36,37 For each step of the data analysis, we performed an intersubjective validation process between two members of the core team (one researcher and one citizen) to verify the reliability and robustness of the data analysis. 27,38 Subsequently, we discussed our results with the coauthors, the process moderator, and the participants of the stakeholder workshop.
T A B L E 1 Citizen science process, timeline, setting, duration and documentation. Duration indicates the duration of the respective event, excluding preparation, postprocessing and the time invested for data analyses of the individual members of the core team. b ECSA-Principles 28: 1-Citizen science projects actively involve citizens in the scientific endeavour that generates new knowledge or understanding.
Citizens may act as contributors, collaborators or as project leaders and have a meaningful role in the project. 2-Citizen science projects have a genuine science outcome. For example, answering a research question or informing conservation action, management decisions or environmental policy. 3-Both professional scientists and citizen scientists benefit from taking part. Benefits may include the publication of research outputs, learning opportunities, personal enjoyment, social benefits, satisfaction through contributing to scientific evidence, for example, to address local, national and international issues and through that, the potential to influence policy. 4-Citizen scientists may, if they wish, participate in multiple stages of the scientific process. This may include developing the research question, designing the method, gathering and analyzing data and communicating the results. 5-Citizen scientists receive feedback from the project. For example, how their data are being used and what the research, policy or societal outcomes are. 6-Citizen science is considered a research approach like any other, with limitations and biases that should be considered and controlled for. However, unlike traditional research approaches, citizen science provides the opportunity for greater public engagement and democratisation of science. 7-Citizen science project data and metadata are made publicly available and where possible, results are published in an open-access format. Data sharing may occur during or after the project unless there are security or privacy concerns that prevent this. 8-Citizen scientists are acknowledged in project results and publications. 9-Citizen science programmes are evaluated for their scientific output, data quality, participant experience and wider societal or policy impact. 10-The leaders of citizen science projects take into consideration legal and ethical issues surrounding copyright, intellectual property, data-sharing agreements, confidentiality, attribution and the environmental impact of any activities.
Find further details about the qualitative research process in the 'consolidated criteria for reporting qualitative studies (COREQ): 32-item checklist' in Supporting Information: Appendix 2. 35

| RESULTS
In total, 165 stakeholders participated in the project. Their characteristics are shown in Table 2.

| Online survey
The analysis population consisted of N = 158 stakeholders with a total of 207 evaluated media (see Figure 1, for details of the recruitment process and tablets (7.4%).
Overall, all of the media were evaluated as being very positive (see Table 3). Stakeholders found the stories to be easy to understand and convey a clear message. Moreover, they perceived the stories as being beneficial, meaning that they would like to see or hear more similar stories and would recommend these types of stories to other people affected by cancer.
The stakeholders perceived the stories as being supportive of their coping with their situation and as a motivation for their further cancer care or for further supporting someone receiving cancer care.
As an emotional reaction, the consumption of media was perceived as being moderately relaxing (calm/relaxed) but evoked strong positive emotions (hopeful/inspired). Correspondingly, negative emotions when consuming the media were rated as being rather low (stressed/worried/anxious/angry).
We compared the perceptions of the survey participants, as shown in the lower portion of Table 3. The evaluation of the media did not differ in the subgroups with specific participants' characteristics or media types. This means that media were similarly evaluated across gender, stakeholder groups and types of media. Additionally, the similarity to the protagonist in terms of gender (match) did not make any difference in the evaluation of the media.

| Qualitative interviews
We conducted four qualitative semistructured face-to-face online interviews and one focus group with three family members. Two of these family members were also cancer survivors. That is why they are listed in Table 2  The stakeholders indicated that the 'my survival stories' were 'intelligible' to them, but they would wish to listen or watch 'more stories in their native language', rather than solely in English.
A lot of our patients do not understand English. were much appreciated by the stakeholders.
The stakeholders supported both media formats (audio and video). Although most of the stakeholders preferred video because F I G U R E 1 Flowchart recruitment process online survey.   That's what bothered me more about the other videos, the best possible courses with little hope. I feel sorry

T A B L E 3 Evaluation outcomes for the total sample and stratified by gender, involvement and gender-matched type of media (mean [M] and standard deviation [SD]).
for the many patients for whom it is exactly the opposite; they have a lot of hope but poor courses.
(CS MSS_Interview SB_20200720, pos. 24) They discussed that such stories could 'cause false expectations' in people watching these videos or could worsen the depression or T A B L E 4 Representative quotes from the stakeholders.

Topic Representative quotes a
Positive attitudes towards life '…The winner is not the one who complains because he has cancer, but the one who makes the best out of it'. (CS MSS_Interview MS_20200721, pos. 14) Encouraging cancer journeys '…to show that he can do that, is allowed to do that and likes to do that, riding a bike and going camping…that is probably why he did not just ride his bike around the lake in Germany, but went to Alaskato show, I can do that'. (CS MSS_Interview MS_20200721, pos. 18) Individual coping strategies for everyday challenges 'I thought it was very nice that the family and the children were also shown in this film…A topic that one often encounters in everyday life…also in my professional environment:…how can one talk to children about cancer?…that was vivid and well done in the film…' (CS MSS_Interview SB_20200720, pos. 7) Openly shared vulnerabilities '…that you can and should show emotions in life…otherwise you will explode at some point and become depressed. You just must be the way you are…and that not everything is so great [just] because you survived; that there are also phases of sadness in life…or mood swings. That is part of life….that you also express that…' (CS MSS_Interview SW_20200717, pos. 64) a These quotes were translated into English by the authors. The interviews were conducted in Swiss German (1), German (2) and in mixed language Swiss German/English (1). Initials are pseudonyms; numbers indicate line numbers in the respective transcript.
grief of persons who are in end-of-life situations or who have lost loved ones to cancer.

| Co-creative workshop
Stakeholders were enthusiastic to share their own stories and experiences. For this reason, we conducted an online workshop with three interested cancer survivors and one friend from the interview stakeholders, wherein they recorded their own stories by using their smartphones.
With the workshop, we explored ways how stakeholders could  With the growing number of cancer survivors 1  The importance of such peer support is also visible in the growing number of freely accessible peer platforms from governments, international research groups and private initiatives. 11,20,43,44 In addition, patients' narratives can also help clinicians better understand their patients' experiences and needs. 33,45,46 In general, a challenge for future cancer survival stories and digital health tools is their sustainability. 8 Currently, with fast-evolving technology requiring constant system adaptations, the technical sustainability of online platforms is an additional challenge, as is financial sustainability. 8,47,48 In contrast, many online platforms are free and easily accessible for most people, which makes them a potentially easily applicable tool for patient information and education. 4,8,16,18,19 The application of a co-creative citizen science approach helped to identify the relevant characteristics of the cancer survival stories.

| Limitations
There were several limitations to our study. We included a limited number of stakeholders in the participatory part of the project. This