Negotiating Neutrality: Designing a Responsive Video to Support Fertility Preservation Decision-making by Cancer-diagnosed Young Female Patients (2024)

This paper explores how novel possibilities for personalisation and interactivity in video media, posed by developments in responsive video technology, can be applied to support patients as they make complex decisions about their health and care. We present the stakeholder-centred design of Exploring Your Options, a narrative-based responsive video developed to support young female patients in understanding and negotiating the fertility preservation options available to them following a cancer diagnosis. By reflecting on findings resulting from the process of designing and analysing Exploring Your Options with the involvement of cancer-experienced young people, health professionals and related stakeholders, we reveal opportunities for designing health information videos leveraging personalisation and interactivity to meet both informational and emotional support needs of patients, and highlight insights and considerations that can guide designers seeking to leverage these opportunities in ways that are sensitive and appropriate to the demands of complex healthcare contexts.

CCS Concepts: • Human-centered computing → Human computer interaction (HCI); • Applied computing → Health care information systems;

Patients experiencing health conditions must often make decisions about their care. Some decisions require patients to evaluate complex information about options based on multiple factors ranging from health status to personal preferences [37]. In the case explored in this paper, patients who need to make choices around fertility preservation before starting cancer treatment must consider factors including type of cancer, urgency of treatment, age, facilities availability, finances, and family planning values [22, 38, 48]. Decisions can be made even more challenging when patients are impacted by worrying diagnoses and must act under time pressure. These factors can make decision involvement a considerable burden for patients [34] and result in decisional conflict and regret [5].

Providing appropriate information in combination with conversations with health professionals has been shown to benefit patients during decision-making processes [4, 17]. Decision-aids – media-based resources that inform patients about their options, from an evidence-based perspective, and encourage and scaffold active engagement in decision-making processes [58] – have been shown to positively impact patients’ knowledge, decisional conflict and engagement [49]. However, these tools can have limitations, such as the risk of overwhelming patients with excessive information, some of which may vary in relevance depending on individual circ*mstances, and the necessity for increased emotional support for decision-makers [12, 35].

Our research explores the potential role new forms of responsive video media can play in supporting patients involved in making decisions about their healthcare. Developments in responsive video technology [e.g. 2, 10, 52] make it possible to create videos that change their content based on viewers’ interactions and other information from or about them. Prior work has hypothesised, and begun to explore, whether these forms might offer ways to support patients during decision-making processes – in particular, by combining beneficial qualities of visual narrative media (e.g. the sensitive presentation of emotionally complex topics by relatable human voices) with novel opportunities for personalisation (e.g. tailoring information to account for the circ*mstances of each viewer) [16, 28]. However, this possibility remains under-explored, with the development of such resources depending on unanswered questions such as: what specific design opportunities do responsive videos offer to support decisions across clinical contexts and patient groups; how will such videos be perceived and used by patients and other stakeholders; and what effects will they have on patients’ ability to make decisions, and experiences of making them?

We present a research project that brought together stakeholders from health professional and patient perspectives to investigate the potential role responsive videos can play in supporting young female1 patients with a cancer diagnosis in making decisions about the preservation of their fertility. Our work contributes: i) the design of Exploring Your Options, a narrative-based responsive video demonstrating how responsive video features can be applied to sensitively address the needs of patients in one specific healthcare context; and ii) key design considerations arising from the process of creating, iterating and analysing Exploring Your Options with the involvement of cancer-experienced young people, health professionals and related stakeholders. Central to the contribution of our findings is understanding how responsive video design can negotiate a trade-off between achieving the neutral, unbiased and complete presentation of information important for effective and safe decision aids [31] while still offering patients potential benefits from personalising content, features, and experiences to their needs and preferences. By developing and presenting design strategies that allowed these two dimensions to co-exist in ways that were satisfactory from both the perspectives of medical professionals and young people with lived experience, we aim to provide practical guidance for leveraging responsive video media across a range of healthcare decision-making contexts.

In this paper, we take a first step toward developing a body of in-depth design insight informing the development of responsive videos for supporting patient decision-making, which are both effective and appropriate for the needs of patients in clinical contexts. We describe and reflect upon a case study in which we investigated how a variety of responsive video features might be applied in support of a particular clinical context: fertility preservation decision-making for young female patients. Our work was focused around the stakeholder-centred design, implementation and evaluation of a prototype responsive video called Exploring Your Options. This happened over several phases of activity: a preliminary exploration of responsive video design possibilities based on an existing decision-aid; a series of consultations with relevant stakeholders to collect feedback on an initial design concept; the production of a working prototype, Exploring Your Options; and an acceptability evaluation of this prototype.

The project was led by a team assembled to provide expertise from multiple key perspectives, including: three researchers in responsive video, a paediatric oncologist and clinical researcher (HP1), and an external consultant who specialised in using participatory film with young people affected by cancer (TS1). The knowledge from within this team was augmented with insights from: four further medical professionals (HP2-5), a third-sector professional who runs a charity in support of cancer patients’ mental health (TS2), an expert in decision-aid design (DP1); and two cancer-experienced young people (YP1-2). Health professionals were recruited through the professional network of the research team, while the young people were referred by the media consultant who had previously worked with them in participatory projects. Participants and research team members were involved in the project at a variety of different stages and capacities, with some involved in more than one activity. We note HP1 (who is a co-author) and TS1 were involved in a dual capacity straddling roles as research team members and participants, and as such quotes from them are included in the reporting of our findings. DP1 has subsequently joined our research team for future phases of work. Table 1 gives details about participants, their backgrounds and which activities they were involved in. Our work received ethical approval from the University of York.

In the first stage of our project, we created a design concept illustrating possible ways responsive video could address challenges observed with prior decision-aids in the context of female fertility preservation. We did this because previous work involving stakeholders in the development of responsive videos has found participants can struggle to envision a full range of design possibilities due to a lack of familiarity with such forms [30]. We based our design concept on Cancer, Fertility and Me [21], which is a clinically approved text-based decision-aid designed to prepare cancer-diagnosed teenage and young adult women of childbearing age for discussion of fertility preservation options.

We began by analysing the Cancer, Fertility of Me decision aid to identify its main features, so they could be translated into responsive video form. Cancer, Fertility, and Me is a text-based resource available as a paper booklet or set of static web pages. It focuses mostly on fertility preservation decision-making required to take place before the start of cancer treatment, with brief sections on decisions to be taken during and after cancer treatment (Fig. 1). The aid begins by providing information about general female fertility, followed by descriptions of how the most common cancer treatments can disrupt the ability of patients to get pregnant and complete a pregnancy in the future. It then presents a range of preservation options, describing them one by one and answering frequently asked questions about each. This is followed by guidance on sources of support for coming to a decision. At regular intervals the aid offers spaces to note down questions that can later be discussed with a healthcare professional, especially on topics (e.g. diagnosis, type and gravity of cancer, overall health, personal values, family planning intentions) too specific to be addressed by a generic decision-aid.

We developed a design proposal for a resource that would preserve the main features and information from Cancer, Fertility, and Me, while employing responsive video capabilities to address challenges posed by prior decision-aids as documented in the literature and observed in clinical practice by HP1. The concept broached the same high-level topics as the text-based decision-aid in the same order (i.e. background information, cancer treatments’ effects on fertility, information on preservation options, guidance on making a decision). However, it had a non-linear structure – in which each patient could view different video content, potentially shown in a different order, depending on their individual needs and preferences. That is to say, while the experience of watching the video would be of viewing a continuous narrative (i.e. as opposed to browsing disparate clips on a video-sharing website), the segments within this would change based on who is watching and their interactions. We describe the key features of this non-linear structure in the following sections, grouping its proposed features around the benefits we hypothesised responsive video could bring to patients.

To investigate the suitability of the concept's proposed features, in the context of both clinical practice and patient experience, we conducted a series of design meetings with stakeholders, including: three health professionals involved in the design of the text-based decision-aid (HP2, HP3, DP1), a young person who had experienced cancer in the past and had to make fertility preservation decisions before the start of their treatment (YP1), and a practitioner who had extensive experience of producing films with cancer-experienced young people (TS1). Each meeting started with a presentation of the concept followed by an open discussion, in which the participant was asked to comment on their general impressions of its approach and main features. The concept was presented to participants using a a set of PowerPoint slides describing and illustrating possible features, and a graph-based diagram illustrating the proposed sections within the non-linear structure and the content available within each (Fig. 2). Meetings were recorded, transcribed and anonymised. We then used thematic analysis [8] to categorise the discussion content by participants’ background (medical or patient perspective), type of reactions, opportunities and concerns, and suggestions of design changes, and to then develop a series of key thematic findings described in the following sections.

In the next phase, we reviewed the aims of the proposed concept and made alterations to its design in response to stakeholder feedback, in particular the divergence between patient needs for relatable and focused content, and potential trade-offs raised by health professional concerns about loss of neutrality. At this stage, we developed a working prototype, Exploring Your Options, with the aim of providing a richer and more concrete illustration of design opportunities to further inform stakeholder feedback. This prototype included video footage shot in collaboration with YP1, who acted as a cancer-experienced narrator in the prototype; HP1, who acted as the main presenter of medical information; and additional medical professionals (DP1, HP2, HP4, HP5) who provided further, specific information at key moments. The research team drafted a preliminary script, which was shared with YP1 for feedback. Subsequently, the script underwent further review and adaptation during filming to align more closely with YP1’s communication style and to better reflect their lived experience of diagnosis and fertility preservation decision making. The responsive video was implemented using the object-based media tool Cutting Room2. In the following sections, we describe the design of this prototype, highlighting key modifications made in response to stakeholder feedback. A trailer illustrating the approach and main features of the prototype is provided in the paper's video figure.

In the final stage of the project reported in this paper, the Exploring Your Options prototype was evaluated with eight participants representing both health professional and patient perspectives. These included participants who had previously been involved in the earlier stages of the research process (HP1, TS1, DP1, HP3, YP1), some of whom were also involved in filming content; a participant who was only involved in filming (HP4); and two participants who were new to the project (YP2 and TS2). We chose these participants to ensure the views of different stakeholders with different levels of familiarity with the prototype could be explored. We considered important to involve participants who had taken part in previous stages of the design development so that they could have the opportunity to reflect on the ideas and contributions provided as they were manifest in the resulting prototype. The evaluation was designed as a preliminary acceptability analysis – providing evidence of the viability of the intervention in support of, and to collect feedback to shape iteration prior to, subsequent patient trials. Therefore, it would not have been ethically appropriate to involve patients presently in the process of making fertility preservation decisions who face considerable pressure in decision-making and would have been exposed to risks of having their decisions incorrectly influenced by an experimental prototype that had yet to be validated for safe use in real decision-making. Instead, we gained a patient perspective from two cancer-experienced young people who had previously made fertility preservation decisions following a diagnosis in the past and were in remission at the time of participating in the study. Both reported that when making fertility preservation decisions they did not feel adequately prepared, mostly due to time constraints: “I didn't feel like I chose” YP1, and “I was told that there wasn't enough time and therefore you couldn't go through with it and that was basically what my fertility preservation looked like, (...) there just wasn't time to even contemplate it” YP2.

Participants were shown Exploring Your Options in one-to-one in person and online meetings, in which they could interact with the prototype on a laptop or online using their devices. Participants were prompted to share any spontaneous thoughts or comments as they viewed, using a think-aloud approach. Following this, participants took part in a semi-structured interview based on a protocol developed by the research team. The protocol included questions on the film's overall approach, on specific design elements, and included tailored questions for medical, patient, and third-sector participants. Visual prompts were used to aid recall of different film segments. Conversations and interviews were transcribed and anonymised. Transcripts were then analysed using thematic analysis to identify key themes around participants’ spontaneous reactions to the film, elements viewed as positive, elements viewed as concerning, suggestions for improvement, reflections on personalisation and neutrality, and suggestions for practical application.

The prototype of Exploring Your Options received overall positive responses from former young patients and health professionals alike in our acceptability evaluation, with the gap between the views of these groups narrowing compared to an earlier design concept. We interpret this as a sign the revised design can accommodate the divergent needs of these stakeholders. In the following sections, we reflect on key design features of Exploring Your Options, to provide insights and recommendations we hope can inform future research on using responsive videos, and modalities sharing in their qualities, to support complex healthcare decision-making.

We began exploring the application of responsive video in the context of medical decision making with a strong focus on how the technology's personalisation capabilities could be used to address information overload. Involving a range of relevant stakeholders in the design of the Exploring Your Options prototype has suggested that while young patients would benefit from personalisation of content as a way of making information more relatable and easier to absorb in a moment of high distress, such opportunities come with risks of inadvertently directing patients toward particular options based on assumptions about complex circ*mstances that can only be appropriately assessed in dialogue with medical professionals. Stakeholder feedback from a patient perspective also emphasised the potential power of using relatable human narrators as a means for delivering information in decision support resources, but insights from health professionals revealed key risks stemming from varying levels of narrator affiliation.

By iteratively developing a prototype in response to stakeholder feedback, we have developed design strategies aiming to negotiate a balance between young patients’ needs for focused and relatable information and the importance of neutrality expressed by health professionals. Central to the design of Exploring Your Options is a storytelling model wherein emotionally-sensitive, video-based narration is provided by a combination of health professionals who deliver medical information and lived-experience narrators who introduce, reflect on, and relate medical content to their own experiences of decision-making; where choice is offered to pick from a pool of narrators from different professional, cultural, and ethnic backgrounds; where personalisation is limited to displaying content in ways that make their consumption more digestible for young patients at a vulnerable stage of their care journey; where interactivity is deployed to offer choices to young patients as to the order and amount of content they wish to explore at a given time; and where regular reflection spaces are offered to gather thoughts and formulate questions for future consultations.

The findings of this paper are based upon the appraisal of a prototype at increasing stages of fidelity, and not its use in practice during patient decision-making. Also, the patient perspective was based on retrospective reflection by people who had previously experienced fertility decision-making, as well as the experiences of others who work regularly with patients. These kinds of findings are valuable because they contribute to evidencing that our proposed approach is sufficiently acceptable [3] to the target population and organisational setting for safe and ethical evaluation with patients who are in the process of making decisions — which is a crucial prerequisite for future patient trials. We note our acceptability evaluation included participants who were also involved in previous stages of the research, including the design of the overall concept and the stakeholder feedback. While we acknowledge that involving contributors at different stages of the research might introduce the risk of positive bias due to familiarity, we considered this choice appropriate as, at this stage of the research, it was our aim to seek ongoing critical feedback which could shape the design process, rather than to conduct a validatory evaluation of a completed prototype. By reporting findings of this kind, and at this stage in our work, we aim to enable other researchers to benefit from the in-depth healthcare professional and patient perspectives that have been so valuable in shaping our thinking and design practice on how responsive videos, and related modalities, can be appropriately used in they context of healthcare decision-making. We will, however, address these limitations in the next stage of our work through further analysis with additional stakeholders external to the research team and, most crucially, patients who in are the process of making fertility preservation decisions.

This research was supported by the EPSRC (EP/M023265/1); the University of York's Internal Development Fund; and the Children's Cancer and Leukaemia Group (CCLGD/2023/01).

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