The use of digital social platforms in enhancing the engagement of AYA cancer patients in research: opportunities, challenges, and ethical concerns

The Use of Digital Social Platforms in AYA Oncology

In the context of AYA oncology, the types of digital social platforms that are often mentioned and discussed include social media, online forums, and networks, which are believed to help researchers and healthcare professionals foster an environment for patient-centered care (BenAharon et al., 2020; Bozovic-Spasojevic et al., 2021; Gorman et al., 2014; Perales et al., 2016). Since AYA patients are more prone to engage in digital networks and communication than other groups of cancer patients, Internet-based platforms have become a staple in the AYA ecosystem (Ben-Aharon et al., 2020).

Not only are digital platforms promoted as a way to assist AYA patients in coping with cancer and navigating through their personal journey (Ben-Aharon et al., 2020; Perales et al., 2016), but also a great tool to raise patients’ awareness about clinical trials and medical research, enhancing patient engagement in those procedures (Perales et al., 2016). Gorman et al. (2014) have found that digital platforms can help carry out consent processes and surveys, which, when combined with multimodal communications, improves research recruitment. Furthermore, as the experiential knowledge of a patient’s lived and embodied experience is considered as much of valuable data as the professional and clinical ones (Ben-Aharon et al., 2020 Caron-Flinterman et al., 2005; Castro et al., 2016), digital social platforms are proposed as assistance to researchers and professionals when trying to understand and incorporate patient perspectives in their work. In this case, digital platforms are no longer merely a tool to promote medical research and recruit patients, but they are massive field sites where researchers can collect accessible data shared by patients as user-generated content (Ben-Aharon et al., 2020).

Patient Engagement, Patient Participation, and Patient Empowerment

Patient engagement has been a pressing topic in the field of AYA oncological research in light of the concerns regarding patient-centered care, patient autonomy, and power asymmetries (Beier et al., 2019). Under the umbrella term of patient engagement, there are two crucial concepts that are usually brought up: patient participation and patient empowerment. These terms intersect and are closely related, with patient engagement serving as a broader concept that encompasses both patient participation and patient empowerment.

Patient engagement refers to the active involvement of patients, which is fostered in an environment that regards patients not, as data points, but as actors with influence on the research process (Barello et al., 2012 Domecq et al., 2014). The Patient-Centered Outcomes Research Institute proposes patients are not only research subjects, but can engage in a research process in four domains: topic selection and research prioritization, designing and conducting research, dissemination and implementation of results, and evaluation (Cheung et al., 2021). Engaging patients in other stages of research also, in turn, improves research recruitment (Domecq et al., 2014. A previous study specifies that genuine and successful engagement must be the combination of health literacy, shared decision-making, and quality improvement (Coulter, 2012. Furthermore, reciprocal relationships between researchers and patients, mutual respect, and trust are also the bases that need to be established to prevent tokenism (Barello et al., 2012). Ultimately, genuine patient engagement should not only mean that patients, including the marginalized ones, are invited to participate in research, but also it should allow patients to really influence the outcomes and help foster a long-term meaningful connection with the patients (Cheung et al., 2021; Hahn et al., 2016). Thus, the concept of patient engagement can be broken down into two intertwining but separate concepts: patient participation and patient empowerment.

Patient participation is the contribution of patients to the decision-making process regarding their care, and to, further, induce organizational and policy changes in healthcare (Castro et al., 2016). According to Beier et al. (2019), the practicality of patient participation manifests through (1) individual informed consent, (2) consultation on the research agenda, and (3) cooperation as the co-investigators. When combined with the research flowchart of the Patient-Centered Outcomes Research Institute (Cheung et al., 2021), the model of participation established by Beier and colleagues (2019), despite providing detailed layers of patient participation, seems to only focus on the first two stages of research, which are ‘Topic selection and research prioritization’ and ‘Designing and conducting research’. It leaves room for extending this model to examine how participation can be facilitated in other stages of the process.

Patient empowerment is understood as a process that helps patients express their needs and gain power and control over crucial issues. In order to promote patient empowerment, the patients´ voices must be treated as an active source of valuable information and not merely an instrument for the improvement of healthcare (Prainsack, 2018 Savio et al., 2016). Kaal et al. (2017) in their work suggested four domains in which patient empowerment can be exercised. Among them, three domains are relevant to the context of digital social platforms: self-management, social support, and community.

Patient empowerment is built upon patient participation and in turn, can also encourage patient participation; however, one does not always guarantee the other (Castro et al., 2016 Savio et al., 2016). Participation without empowerment runs the risks of exploitation or token engagement (Beier et al., 2019 Hahn et al., 2016). When both participation and empowerment are established, so is genuine engagement among patients. Patient engagement has been examined in the context of patient portals in recent years, from which the social and communicative aspects of these portals emerge as important elements in helping patients engage with the technology (Antonio et al., 2020 Irizarry et al., 2015). However, on top of the fundamental distinctions between patient portals (data-focused) and digital social platforms (network and communication-focused) (Vicari, 2022), there is still a lack of scholarship focusing on how patient engagement can be facilitated on the latter. This paper will bridge this gap by examining how digital social platforms can induce patient participation, patient empowerment, and ultimately, patient engagement in research, using the cross-disciplinary frameworks that are participatory culture and data ethics.

Participatory Culture

Participatory culture is the term coined by Jenkins (2009) and is defined as “a culture with relatively low barriers to artistic expression and civic engagement, strong support for creating and sharing one’s creations and some type of informal mentorship whereby what is known by the most experienced is passed along to novices” (p.7). The concept of participatory culture via social platforms has been adapted and applied to the healthcare domain to discuss the possibilities of patients taking more active roles in decision-making and patients engaging in data contribution (Eysenbach, 2008) and the freedom of expression fostered by social media when it comes to pain communication (Gonzalez-Polledo, 2016).

According to Jenkins (2009), participatory culture manifests through the membership of a virtual community (affiliations), the production of content in different media formats (expressions), the act of working together to generate new knowledge (collaborative problem-solving), and the flow of such knowledge and information (circulations). Since these parameters are heavily based on an individual level, more recent scholars have contributed other nuances focusing on more systematic elements to the discourse of participatory culture. Spurgeon et al. (2009) argued that the participatory culture is driven by pre-determined agendas for the stakeholders involved and thus, by considering what these agendas are, we will have a more critical understanding of participatory culture and the development of participation. In addition, according to Mario and Daria (2016), participatory culture can lead to the spread of inaccurate information and information overload because of a lack of accountability for those who release such information. Therefore, media literacy plays a key role and provides a solution for gatekeeping and responsible media behavior, which highlights the support from the system that facilitates such participation. Deriving from the aforementioned theories and discussions, I compile a new set of parameters for the participatory culture of digital platforms used in AYA oncology:

• Personal expressions – the act of generating data and producing content in different media formats.

• Affiliations and connections – the sense of belonging to a certain community and the relationships with other members.

• Interactivity and collaboration – the act of interacting and working together to develop or disseminate knowledge.

• System and support – the agendas and facilitation from the organization

Data Ethics in Research on Digital Social Platforms

Combined with the interactivity among participants, the participatory culture of the digital platforms created opportunities for researchers to collect naturally-occurring data conveniently and economically (Herron et al., 2011). The influx of user-created data poses concerns about ownership, access, management, and use of such data, which are all important and critical decisions that can influence the participation and empowerment of patients (Prainsack, 2018). The issues regarding collecting and using user-created data for research have been discussed in previous literature and can be categorized into three main areas: privacy, informed consent, and vulnerabilities of creators.

• Privacy – There are many nuances that cause difficulty in identifying if certain content is made for public or private use, such as the settings of the sites and the users’ intended audience (Hudson & Bruckman, 2004; Townsend & Wallace, 2016). In the context of research in AYA oncology, it cannot be assumed that all content and data are created by patients with the purpose of research because AYAs also use digital platforms to share and connect with their peers in a casual manner (Bozovic-Spasojevic et al., 2021; Perales et al., 2016).

• Informed Consent – It is not always sound to equate users having agreed to the terms and conditions of the platform with informed consent in research because of the lack of user’s understanding and the non-negotiable nature of the terms and conditions (Merriman, 2014 Townsend & Wallace, 2016). Furthermore, the right of withdrawal is less explicit and more difficult to assert in this context than in traditional human subject research, as users can delete their data at any time without the researchers’ awareness (Townsend & Wallace, 2016).

• Vulnerabilities of Participants – AYAs’ personal data is sensitive data that might cause harm if it is identifiable or traceable once published or accessed by different parties other than their intended audience (Herron et al., 2011). By discussing the prevention of data exploitation, this research aimed to uncover the professionals’ perspectives on safeguarding patients’ data and maintaining trust within the platforms.

Peer Support and Community Building

As revealed by the healthcare professionals interviewed for this study, a crucial purpose of digital social platforms is to foster connections among AYA cancer patients, providing a sense of belonging and emotional support. AYAs on these platforms can share their experience with the cancer treatments they receive and exchange insights on how they cope with their conditions, especially with problems that are specific to their age group, such as coming back to school or work, or questions regarding fertility and relationships. Furthermore, some patient organizations are putting efforts into establishing a search-and-find function for platform users to look for people who share similar issues or who are in the same age group for location.

The participatory culture of these platforms is what facilitates this sense of social support and community through three essential pillars: personal expressions, interactivity, and connections. Regarding personal expressions, AYA cancer patients, especially on forums and private communities, are able to express themselves and their experiences in their own way. All platform facilitators interviewed for this study pointed to young patients’ varying approaches to self-expression, from making a blog to joining a discussion group or server, utilizing many modalities of communication, like texts, voice messages, images, and videos. Such freedom and authenticity of expression form the basis on which the next parameter of participatory culture is built: interactivity. All interviewees reported that AYA cancer patients are active in the discussion groups and communication servers. Interestingly, some discussion groups have moderators who are also AYA cancer patients, and they are in charge of welcoming new members joining the platform, making the newcomers feel welcomed and accepted. A welcoming atmosphere, where individuals who have experienced similar situations greet and support newcomers, is a crucial success factor in peer support communities according to interviewees. Such interactions between participants in turn also encourage individual expression. Through self-expression and interactivity, the connections and affiliations between users of these platforms emerge. The most prominent relationship that is fostered by the participatory culture of digital social platforms is the one among patients. The informants from the interviews who are also AYA cancer survivors stressed the meaning of such social connections facilitated by these platforms.

Peer support networks and community building play an essential role in empowering patients, which is an important element of patient engagement. It resonates with the notion that peer interaction and community are the crucial pillars of patient empowerment (Castro et al., 2016; Kaal et al., 2017). With peer support networks becoming more popular, patients are finding empowerment through validation received while sharing experiences with others. Although this section of findings has not yet indicated any direct implications for patient engagement in the context of research, it is still an essential antecedent of the findings discussed in the next areas.

Information Dissemination and Health Literacy

The findings from the interviewees confirmed that digital social platforms are also established to provide reliable information to AYA cancer patients. There are mainly two types of information being distributed on these platforms: one is validated information about medical or psychosocial issues and the other is experience-based information.

With the validated health information, all interviewees agreed that the goal of using digital platforms is to collect all relevant information and make it manageable as well as findable for AYA cancer patients. Being informed and educated about their own health issues is a crucial contribution of self-management that leads to patient empowerment (Kaal et al., 2017). As multiple interviewees reported, there is a significant gap in health literacy for AYA cancer patients, resulting in feeling like they have lost control of their lives. The informants also agreed that health literacy is one of the major barriers to patient engagement in research. AYAs are reported to often question the validity of their contributions and the meaning of their roles when participating in research panels or advisory groups. Moreover, with patient portals that provide individuals with access to their own medical data, some patients may feel uncertain about their ability to comprehend and interpret specific medical conditions, thereby raising concerns about accurately assessing their health status. That knowledge gap not only hinders patient participation, but also instrumentalizes such participation if it occurs because the patients are not thoroughly informed, equipped, and empowered.

A critical problem in distributing validated information to AYA cancer patients lies in how to communicate this complicated knowledge in an accessible and comprehensible way for them. Interviewees brought up different strategies to tackle this challenge. Using digital social platforms is already one way to reach more AYAs as these platforms allow information to be shared in different formats and media types, which patient organizations have to adapt to if they want to keep their audience engaged despite the different levels of comprehension and cognition across the groups. An informant also brought up the difficulty in balancing a relatable and humorous approach with a serious tone of voice when it comes to communicating with AYA cancer patients. Consultation and collaboration with the AYAs during this process are believed by most interviewees to help solve the problem.

The responses also reveal that, on a more individual scale, patients sharing their experiences, either to a patient organization or a group of patients to create content or to each other directly on the platforms, is also a practice of keeping the circulation of information. Experience-based information usually attracts a lot of attention and engagement from AYA cancer patients because of its relatability and assumed authenticity. However, the very subjective nature of this type of information also raises some questions about its credibility. There are forums and online communities that have moderators in their channels or discussion groups. These moderators are also AYAs, and in some cases, they step in or report to admins if there is misleading or manipulative content that adamantly pushes people in a certain direction or to adopt certain practices.

The participatory culture of digital social platforms provides the possibility of collaboration that allows patients to work together and take active roles in information dissemination. This is a strong indication of empowering patients by letting them take part in activities, find their place in the community, and be recognized for their contributions. This phenomenon cannot happen independently from the previous area of peer interaction and community, without the manifestation of participatory culture in personal expressions, connections, and interactivity. On top of that, it is apparent that the system and support behind these platforms facilitate both top-down or center-out communication (the information distributed by healthcare professionals) and bottom-up communication (the content created, shared, and moderated by patients themselves). Both types of communication help enhance patient empowerment through self-management and a sense of contribution to the community.

Research Promotion and Recruitment

Along with health information, digital social platforms are also a convenient tool for the promotion and recruitment of research participants, as revealed by the healthcare professionals who participated in this study. There are different approaches emerging from the interviews about how this process can be conducted.

The most straightforward strategy is when patient organizations post about research projects that are open for recruitment on their platforms. The accessibility of digital social platforms allows such information to reach many more AYA cancer patients and then bulletin boards at hospitals or clinics and can potentially lead to more research participants. However, here they encounter the same caveat as in information dissemination: how to ensure effective and transparent communication. Addressing and breaking down the educational disparity between researchers and the AYA patient is a determining factor of research recruitment. Additionally, some respondents believed that there is a lack of transparency coming from the researchers’ end that can hinder patient participation in research. Providing AYAs with an explanation about why their participation is useful not only is an act of empowering patients but can also result in a boost in patient participation because patients can see themselves as informed and active contributors instead of being reduced to data points (Barello et al., 2012 Domecq et al., 2014). This practice can also mitigate the feeling of invalidity when patients take on the role of a research consultant or research partner. Furthermore, as some research using self-managed health data can burden patients, clear communication of responsibility and expectation, combined with informative and educational information, can help improve research enrollment.

Another approach to research promotion and recruitment is to allow patients to indicate their preferences and interests through profile sections or questionnaires, enabling researchers to directly reach out to potential participants who meet specific criteria. Findings from the interviews indicate that this practice in reality is mediated and moderated by patient organizations who have access to the data from patient’s profile or their questionnaire responses on the platforms. An interesting finding emerging from this area is that some organizations make use of this method to address the problem of representation and inclusivity in research. By directing researchers to underrepresented groups of patients among the AYAs, patient organizations are not only closing the inclusion gap in research participation but also lifting the burden on the overrepresented and overworked patients.

The next strategy discovered from the interviews is communicating research results to AYA cancer patients. According to the interviewees, effective communication of research results can have two positive outcomes: empowerment for those who participated in that research and encouragement to potential participants for future research. In this context, the participatory culture of digital social platforms as discussed in the previous section about information dissemination can influence both patient participation and patient empowerment, and ultimately, patient engagement in research. Moreover, when patient organizations consult or collaborate with AYAs to disseminate the research findings, that practice is a form of participation in research, because the research process does not only involve the design and conduct of research but also the dissemination of results (Cheung et al., 2021 Domecq et al., 2014).

Finally, the interview responses also highlight the effectiveness of peer support in spreading research messages and recruiting participants. People with similar experiences tend to trust each other, making peer-to-peer communication a valuable strategy for disseminating information about research projects. Some interviewees believed that this was a very effective way to get more AYA cancer patients on board. Peer support and community as previously established by digital social platforms are found to be helpful for research promotion and recruitment. This view corresponds to and strengthens that from previous research, as established by Ben-Aharon et al. (2020) and Gorman et al. (2014), that demonstrate how peer support and community building, through facilitating empowerment, can establish the basis for patient participation as well.

Data Sharing and the Potential of User-Generated Content

The platform facilitators and researchers interviewed for this study have provided detailed insights into the process of data sharing and collection on digital social platforms. The statistical data from user activity, such as the number of views, reactions, and engagements or the most searched keywords, are commonly used to detect areas of interest or concern that the majority of patients have. This can point the healthcare professionals to either evaluation and improvement of healthcare services or to the selection and prioritization of research topics. Some organizations make use of the features on these platforms to conduct informal digital surveys and polls that serve similar purposes. However, when it comes to user-generated content, most interviewees except for one reported that no effort has yet been made to incorporate such data into research. Nevertheless, the consensus is that user-generated content is a valuable source of data, and if done ethically, research using this content can greatly benefit AYAs. It is implied by some interviewees that the safe and empathetic environment resulted from peer-to-peer communication and community building as well as the availability of the platforms help AYAs share insightful information that they either are not comfortable enough to share directly with their healthcare providers or they do not have time to during their traditional meetings. Therefore, user-generated content holds great potential to be employed in qualitative and ethnographical research. Despite being deemed to be valuable, user-generated content when put in a research context poses questions about informed consent, privacy, data management, and protection of AYA cancer patients.

The first ethical issue that patient organizations and researchers are concerned with is the struggle to establish informed consent with user-generated data. The terms and conditions agreement of the platforms is usually the first and last consent procedure the users have to go through in order to engage with the platform, where their data and activities are recorded and stored. All interviewees believed that this one-time consent procedure is problematic as most platform users do not read or do not have the capacity to understand what these terms and conditions entail. They collectively agreed that more rigorous consent processes have to be installed in order for user-generated content to be used, where the research purpose, the time and range of data collection, and how the data will be dealt with are explicitly stated to ensure transparency. Some interviewees are positive that AYA cancer patients, once are informed, will be happy to comply and have their data collected for research purposes. However, others are worried that once the users are informed that their content will be collected and analyzed, they change their behaviors due to perceived surveillance, which can compromise the authentic value of user-generated data. Another concern regarding informed consent is the right of withdrawal. On some forums, when a user deletes their account, their profile will be deleted but their comments and replies in discussion groups will remain so that other users can still make sense of the conversation. The question being posed here is: if the user-generated content in those discussion groups is collected, is the act of deleting an account equivalent to withdrawal from research and how should research be notified and deal with such a case? The use of user-generated content in research requires researchers to reconsider how to exercise these rights in a digital setting.

The next ethical issue of user-generated content is related to privacy and data management. One of the key concerns expressed by interviewees is the safeguarding of patient privacy and the need to avoid exploiting these platforms as mere data collection tools. The use of centralized platforms, integrated with communication systems, is seen as a safer alternative for protecting patient data. By using forums and private communities established by patient organizations, where the data remains within the centralized system, the ownership and control of the data can be maintained within the consortium conducting the research. This ensures that sensitive conversations and personal information are not owned or accessed by external parties like with mainstream social media and big technology companies. The lack of ownership and control over data on social media platforms poses challenges for research organizations, as they cannot ensure the privacy and security of the data collected. Despite this, mainstream social media platforms remain popular among young people, making it easier to reach the target audience. How to achieve a balance between accessibility and privacy becomes a crucial consideration for AYA oncology research. While strict gatekeeping measures ensure a secure and authentic community, they can also act as barriers that discourage participation. Besides the threat of exploitation that is related to the issues of privacy and data ownership, some interviewees also stressed the importance of anonymity and double-blind study when dealing with user-generated content so that the identity of participants cannot be tracked. Such measures are put in place to protect AYAs from social stigma and prejudices against their health conditions. Finally, even though all interviewees agreed that user-generated content is a valuable data source, some of them emphasized the priority and intention of their patient organization to first and foremost a safe place for AYA cancer patients to connect with each other, exchange experiences, and receive support.

Conclusion

This study contributes to the growing body of knowledge on patient-centered research approaches and informs the development and implementation of effective strategies for patient engagement in the digital age. By employing theoretical frameworks coming from media studies and critical data studies – participatory culture and data ethics – this research provides a different and more detailed lens into the mechanism of digital social platforms and their applications in AYA oncology. Emphasizing the engagement of patients in all four domains of the research process, the study expands on previously established models of patient participation and patient empowerment to construct a comprehensive and thorough understanding of how digital social platforms potentially leverage the engagement of patients and what challenges as well as ethical concerns are entailed in that process. With ongoing advancements in technology and a commitment to patient-centered care, digital social platforms have the potential to revolutionize patient engagement in research and pave the way for a more participatory and impactful healthcare landscape.