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Abstract

Background: Tackling problematic polypharmacy is a global health safety priority and is likely to require a multifaceted approach. UK health policy hinges around the potential of medication reviews, but deprescribing in medication reviews is uncommon and evidence on how to harness their potential is sparse. Methods: Storytelling Group, a design-led methodology, was used to invite experts-by-experience (‘story-creators’) to re-imagine the medication review. We facilitated three 2-h workshops with seven story-creators, aged 65+ with experience of polypharmacy and an interest in identifying ways of safely reducing medications. Participants collaboratively built fictive scenarios, creating characters, chronology, contexts and plots, identifying touchpoints and incorporating personal experience. Provocative prompts (‘What ifs?’) aided story development. Results: Participants created five rich fictional narratives, featuring protagonists affected by polypharmacy and medication reviews involving new and different professionals, roles and contexts. Storytelling Group enabled experts-by-experience to use their knowledge of current medication review practices as their motivation to inspire novel imagined arrangements. This speculative exercise, deliberately crafted to distance participants from current realities, enabled them to share insights and propose new possibilities to address polypharmacy. The process revealed a range of tacit assumptions regarding the roles of healthcare professionals, patients, medications, the health system, and their inter-relationships. Only two of the five narratives they co-constructed involved deprescribing, neither in conventional clinical settings. We then curated a prototype collection of seven fictional short stories (‘Let’s Talk Differently About Medicines’) which we refined through user-experience testing. Conclusions: Our study is an empirical exploration of a design-led methodology which may be adapted for application in healthcare improvement when the phenomenon being addressed is sufficiently complex as to escape easy articulation or resolution.

Keywords

polypharmacy medication review co-design narrative health care improvement

Introduction

The UK government identified problematic polypharmacy as an urgent patient safety priority in its 2021 overprescribing review (Department of Health and Social Care, 2021). The review’s findings have prompted nationwide implementation of activities designed to reduce harmful overprescribing, reduce unnecessary expenditure and waste, and contribute to a ‘Greener NHS’ (Department of Health and Social Care, 2021; NHS England, 2022).

Swinglehurst and Fudge characterise polypharmacy as a ‘wicked problem’ (2017). One characteristic of wicked problems is that they are not readily amenable to solution; it is difficult to identify the actions that might narrow the gap between what-is and what-ought-to-be (Rittel & Webber, 1973). The scale and complexity of polypharmacy, and the urgency with which it is being targeted both nationally and globally (e.g., WHO Medication without Harm initiative) arise from evidence that polypharmacy is escalating (Guthrie et al., 2015; Vos et al., 2022) and is responsible for avoidable harms including falls, drug-drug interactions and hospital admission. Older people are more likely to experience polypharmacy (driven by the accumulation of medical conditions with age) and more likely to experience its adverse consequences. The 2023 UK Chief Medical Officer’s report calls for ‘realistic discussions’ between patients and doctors on the grounds that: ‘Improving quality of life in older age sometimes means less medicine, not more.’

Medication reviews are recommended to address problematic polypharmacy. The NHS England Network Contract Directly Enhanced Service (NHS England, 2021) requires Structured Medication Reviews (SMRs) for patients prescribed 10+ items of medication (‘higher risk’ polypharmacy), promoting better conversations and shared decision making. The evidence that medication reviews are successful in achieving clinically important outcomes is sparse (Geurts et al., 2012; Holland et al., 2008; Huiskes et al., 2017; Joseph et al., 2023) and their purpose is often ambiguous (Maidment et al., 2020). Early implementation of the SMR programme (which assumes clinical pharmacists will conduct most reviews) has been criticised for its limited engagement with the evidence and hasty introduction, coupled with inadequate support for pharmacists to deliver the person-centred consulting necessary to foreground patient priorities over institutional gains (Madden et al., 2022; Stewart et al., 2021).

In our recent study of medication reviews involving older people affected by polypharmacy we found that consultations were lengthy, but reductions of medication were rare (Swinglehurst et al., 2022). Clinicians emphasised the challenges of emotional and relational aspects of review processes over the technical aspects of prescribing (such as drug-drug interactions). Much decision-making about medicines occurs outside the clinic and patients often have concerns that they do not share in medication reviews (Fudge & Swinglehurst, 2022; Swinglehurst & Fudge, 2021). Our point of departure for this study is that the potential of the medication review is rarely fully realised.

We turned to the discipline and methodologies of design to explore their potential for responding to (and intervening in) complex problems (Buchanan, 1992; Suoheimo et al., 2021; Zimmerman et al., 2010). Co-design, which is gaining momentum in healthcare improvement, champions the inclusive participation of staff/patients/families in co-creating care (Cottam & Leadbeater, 2004). Experience-Based Co-Design (EBCD) is a well-known example which prioritises the lived experiences of participants within a collaborative process to ensure solutions that resonate with participants’ needs (Bate & Robert, 2006). Design-led research is based on a commitment to generating knowledge through the process of designing, offering a transformative methodological approach which remains relatively novel and underexploited in healthcare (Crowe et al., 2022). Rooted in the ‘research through design’ philosophy (Frayling, 1993), it engages the act of design to deliver creative exploration within research, blending creation and enquiry, content and conduit. The tangible outcomes created serve a dual role. First, they embody research insights (supporting knowledge translation). Second, they provoke dialogue; more speculative forms of design can unsettle existing conventions (Dunne & Raby, 2014).

In this paper we describe a project in which we invited experts-by-experience to ‘re-imagine the medication review’ drawing on principles of co-design (Robert et al., 2022). We used dynamic methodological tools from design research including: visualisation (Suoheimo et al., 2021); storytelling (Moggridge, 2007); and future-oriented thinking, or speculation (Dunne, 2006). Bringing together narratives-of-experience and narrative-as-method enabled the integration of vibrant testimonials into the co-design process and encompassed the breadth of emotions patients experience as they navigate health systems (Crowe et al., 2022). The insights informed the crafting of empathetic interventions in medication reviews.

Sharing and listening to stories provides opportunity for participants to co-construct rich accounts of social experience, practices, values, motivations and speculations (Haigh & Hardy, 2011; Randall, 2014). Such narratives illuminate not only bodily suffering but also shed light on the configuration of care (Fudge & Swinglehurst, 2022; van Blarikom et al., 2023) and offer opportunity to rehearse alternative futures and catalyse re-configurations of care (Greenhalgh et al., 2005; Hawthornthwaite et al., 2018; Morgan, 2012). Drawing on design research, co-design principles, and the transformative power of storytelling (Brandt & Grunnet, 2000; Dindler & Iversen, 2007), we developed a tool and a strategy to narrow the gap between what-is and what-ought-to-be in the complex arena of ‘higher risk’ polypharmacy.

Methods

This project is a culmination of a larger in-depth ethnographic study, APOLLO-MM (Addressing the Polypharmacy Challenge in Older People with Multimorbidity). The research methods are described in detail elsewhere (Swinglehurst & Fudge, 2019) and included: 422 hours of observation across general practice, community pharmacy and domestic settings; narrative interviews with professionals and patients; and video-reflexive ethnography (VRE) (Swinglehurst & Fudge, 2019). In this paper we focus on our use of a co-design method, Storytelling Group (Kankainen et al., 2012) in which we integrated and extended our ethnographic findings to provide ideas for intervention(s) that might be evaluated in practice.

We invited seven experts-by-experience from the Peninsula Public Engagement Group (PenPEG), aged 65+ with experience of polypharmacy and an interest in reducing medication burden for older adults. We held three 2-h workshops (online due to COVID-19 pandemic) in which we asked participants (‘story-creators’) to re-imagine the medication review, specifically its potential for addressing polypharmacy.

Central to Storytelling Group is the collaborative creation of stories as a technique to inform and inspire design ideas (Blomkvist & Holmlid, 2009). This is overseen by a creative facilitator whose role is to be sensitive to design possibilities and pursue these creatively within the storytelling process. Story-creators collaborated to create fictive scenarios. We asked them to situate the scenarios in the future, creating an imagined patient, context and experience of medication review. Engagement with an imagined future was deliberate, designed to loosen story-creators’ attachments to current realities/constraints, whilst simultaneously enabling them to draw on familiar healthcare experiences to consider alternative possibilities. Our aim was a public-facing output based on the findings of this creative exercise, but at the outset we did not know what this might be.

Workshops were guided by AT (creative facilitator, design researcher) and two qualitative researchers who had conducted the wider ethnographic study (DS, NF) who observed, took notes (DS) and contributed contextual information (NF, DS). Story-creators worked together through stages of character building, agreeing time periods for the story (e.g., 10-min; 1 year) and selecting (from lists based on our ethnography) the multiple conditions each character experienced.

The creative facilitator (AT) listened actively, with occasional prompting and requests for clarification. To encourage creative thinking, dialogue and consideration of specific areas of interest related to polypharmacy, AT aided plot development by introducing ‘What if?’ prompts (Table 1 shows some examples) into emerging stories partway through, selecting them from a list of prompts prepared before the workshop series by NF and DS. AT selected prompts iteratively choosing those most likely to elicit narratives of interest that were coherent and relevant to the emerging storyline. Some prompts were firmly grounded in ethnographic observations, research evidence and knowledge of contemporary medical practice. Others were inspired by analytic themes from our research but more speculative in their details.

Table 1.

Examples of ‘what if?’ Scenarios.

1. Environmental impact of drugs

The patient has just joined a local environmental group. At his/her first attendance at one of the locality meetings he/she sees the senior partner from the GP surgery. To his/her great surprise, at one point in the meeting the GP raises their hand and points out that medication and the pharmaceutical industry are major contributors to environmental catastrophe. The GP says: “If only GPs knew how much damage these medicines are causing, they might think twice before prescribing them.”

2. GP who specialises in stopping medicines

The patient looks at the practice website to learn about the doctors and find out if there is a particular doctor with whom he/she would like to book an appointment. He/she notices Dr. Bright, who has recently joined the practice, has a special interest in stopping medicines. How does the patient react?

3. Hot off the press: New ruling: Oral medicines will be chipped

All oral NHS medicines will contain a tiny chip activated when a patient swallows a medicine. The dashboard in the GP surgery will enable GPs to see remotely exactly when patients consume their medicines. It is hoped that this will be a significant step towards tackling the NHS-wide problem that many drugs are wasted because they are not consumed

4. The unexpected dosette box

The patient goes to collect their regular medication from the pharmacy. Instead of receiving them in their usual boxes in a paper bag, the patient is given a pharmacy-filled blister pack (or ‘dosette box’), with all their medicines set out by day of the week, with four compartments per day indicating when they should be taken

5. The self-imposed quota

The patient is concerned not to exceed his/her self-imposed quota of 400 mg a day of medicine. How does he/she react when a new medicine is prescribed? What does he/she do?

6. The placebo-controlled trial

At a visit to the pharmacy the patient is given a leaflet about a new trial and invited to take part. The trial involves half of the patient’s regular medicines being replaced with placebo pills. The trial seeks to investigate the impact of reducing the burden of polypharmacy. The patient would not know which pills were replaced with placebo pills and all their pills would continue to look exactly the same. How does the patient react? Do they decide to take part?

Incorporating ‘What if ?’ prompts into Storytelling Group was a way of adapting the approach to embrace the creative potential of speculative enquiry, mapping the prompts broadly to a spectrum of possible realities as a future forecast (see Figure 1). The ‘probable’ includes events which are likely based on the current situation/trend, the ‘plausible’ and ‘possible’ explore alternative futures and the extremes of scientific feasibility (steering clear of fantasy/science fiction). Introducing provocations into story creation fostered collaborative imagination and innovation in line with co-design principles (Brandt, 2006). The purpose of the diagram displayed within Figure 1, is not to suggest that each ‘what if’ scenario can be plotted unproblematically against a specific timeframe. Rather it illustrates the range of different possible relationships between the ‘now’ and an imagined ‘future’ as relevant to a scenario. The six scenarios from Table 1 are plotted on Figure 1 in response to the researchers’ interpretations of their relationship to reality.

Figure 1.

Situating the ‘What if’ scenarios (1-6) on an illustration, initially conceptualised by futurologist Stuart Candy and subsequently modified for application in speculative design contexts by Dunne and Raby (2014), creating a framework for speculative design practice and vision. Adapted and re-drawn for this publication by AT.

An illustrator visualised workshop discussions (Figure 2) and shared visualisations with story-creators regularly to invite reflexive discussion. This went beyond ‘visual notetaking’ (a representational role) since the illustrator’s interpretations of characters and storylines became a catalyst for further story building (a constitutive role). Visualisations were refined iteratively in response to story-creators’ considerations. For example, story-creators asked the illustrator to reconfigure illustrations away from a clear temporal ordering towards illustrations in which the patient was placed in the centre.

Figure 2.

Two visualizations created through group discussion in Workshop 2. (Illustrator: Camille Aubrey).

Researchers created detailed ethnographic accounts of each workshop which informed ongoing analysis and the planning of subsequent workshops.

Findings

Participants created five fictional character profiles, with descriptors including age, gender, ethnicity, occupation, type of residence, and groupings of multiple long-term conditions. Story-creators (all new to this methodology) constructed imaginative narratives and plots in which protagonists interacted with a range of professionals and services spanning different times and spaces (summarised in Table 2). They drew frequently on their personal experiences of health, illness, medicines, and health service encounters to support narrative creation.

Table 2.

Summaries of Stories Created in Storytelling Group Workshops.

Story Title	Co-designed Storyline	Are Any Medicines Stopped?
1. Do you really think I need this?	Mary is invited by her GP practice to attend for a medication review. Mary has a review with a new GP who has a special interest in reducing medication. Mary is scared they might stop her antidepressants. The new GP suggests reducing some medications but assures Mary she can come back if needed. On leaving the doctor’s room, Mary thinks to herself ‘Wouldn’t it be reassuring if there was a café area in the practice where I could have a cup of tea with someone who would make sure I am all right before I leave’. Maybe she could get some support from someone in the wider care team, someone who is not a doctor - someone she could just chat with?	NO medicines were stopped in this story, but the GP who specialises in stopping medicines seeds the idea of cutting down on medicines. Mary ends up prescribed more medicines - including steroids - after a hospital stay.
		Mary returns to see this GP when she suspects the steroids are causing some side-effects.
		There is a subtle change for Mary between appointments towards considering the possibility of stopping some medicines. She goes as far as asking the GP ‘Do you really think I need this?’
2. A chat with the ‘medicines facilitator’	Sanju arrives for a medication review accompanied by his daughter. His daughter is stressed as Sanju is refusing to take his medication. The GP suggests that a chat with a ‘medicines- facilitator’ might help Sanju work out what he wants from his medicines. Sanju meets with a friendly medicines-facilitator before his next visit to the GP. This person listens to him, and Sanju feels relieved and more confident about talking honestly about his medications with the GP.	It is UNCLEAR whether any medicines were stopped.
2. A chat with the ‘medicines facilitator’		Sanju was not taking his medicines as prescribed. Things seem to change for Sanju when he has the chance to spend 30 minutes with a medicines-facilitator talking openly about his medicines. By the end of this story, Sanju’s medicines ‘are sorted out’. The story-creators couldn’t articulate the details of this ‘sorting out’ but were clear that this was prompted in some way by the chat with the medicines-facilitator.
3. The medication review at home	A healthcare practitioner (HCP - story-creators oscillated between this being a GP or a nurse practitioner) visits Myrtle in her home for a medication review. Myrtle immediately produces a large bag of unopened medication and says that the most helpful thing would be to throw them all away. The HCP pulls up a chair to sit next to Myrtle and says “Let’s see what we can do.” Some medicines are vital, but they discuss alternative ‘non-drug’ options for others, such as mindfulness for depression and dietary changes for irritable bowel syndrome. By the end of the home visit, some medicines are stopped and Myrtle feels cared for and listened to	YES, some medicines are stopped and only the most essential medicines are continued. The changes are prompted by Myrtle expressing clearly what would help her most and the HCP listening to this concern. They work it out together, going through the bag of medicines one by one.
4. The medication review by telephone	The GP is contacted by the hospital to say a change to medication is needed. This prompts the GP to phone Harold at home for a medication review. Harold is keen to come off steroids and hopes he may be able to discuss reducing them. Bowel cancer remains Harold’s most pressing concern and he often neglects to take the medicines that are prescribed for other conditions. During a second call, it becomes clear that Harold can’t easily take his medicines because of difficulties handling tiny pills. The GP suggests the pills are changed to a liquid form and organizes this with Harold’s pharmacist. Harry feels well cared for and doesn’t mind the appointments being held by telephone. He feels more comfortable sitting in his armchair at home and doesn’t feel the usual pressure to stick to the 10-min appointment time. The 10-min chat he’d had with someone from the surgery before the medication review helped Harold feel they were interested in him as a person and not just a pill-taker	NO medicines were stopped, despite the story-creators being specifically invited by the creative facilitator (in this example) to create a story that included a change in medication. One story-creator recounted an experience of ‘the battle’ he went through to stop a medicine for a family member, but the only change that the protagonist experienced was a change in the form of medicines from pills to liquid. This change was welcome and attended to one aspect of the ‘burden of treatment’ but did not result in a reduction in the number of medicines prescribed.
5. The polypharmacy trial	Arthur visits his local pharmacy and is invited to take part in a clinical trial. The trial involves half of his pills being replaced with placebo pills. He wouldn’t know which pills are changed. Arthur is sick of taking so many pills so he is keen to take part. However, his long-term partner is unsure about the risks involved. He would prefer it if Arthur and his GP decide which tablets to stop. Arthur explains that taking so many medicines is also risky but that no one talks about that! He decides to take part	YES – medicines are stopped by the protagonist by deciding to take part in a clinical trial. He discovers this after one year, when data from the trial shows that the patients who were in the placebo (intervention) arm are doing better with fewer medicines. The protagonist is delighted and decides to speak with his GP to consider whether there are any other medicines he can stop.
5. The polypharmacy trial		Story creators discussed the different ways of deciding which medicines might be stopped (e.g., GP decides, patient decides).

The explicit aim of the co-design process was to re-imagine the medication review in ways which would support reduction in medication burden for older people affected by problematic polypharmacy, an intention shared by all participants. We anticipated storylines would explore different ways of achieving this and conclude with reductions in medication, generating ideas which could inform service re-design in practice. Participants created imaginative stories but struggled to conceive scenarios involving the discontinuation of medications. Only two stories (3 and 5) reached a clear resolution in which medicines were stopped, both in unusual contexts (a clinical trial, the patient’s home). This may reflect strongly held societal assumptions regarding the efficacy of medicines (i.e. a medicine would not qualify as a medicine at all without the assumption of efficacy) (Whyte et al., 2002) and contemporary medical practice in which medication reviews tend to result in increased prescription counts (Joseph et al., 2023). Common storylines included: a desire for honest discussions about medicines; concern that ‘medical’ spaces (such as clinical consulting rooms) can constrain meaningful conversations; clinicians may not readily empathise with patients’ concerns about medicines; issues such as risk, benefit, harms are difficult to grasp and talk about; alternatives to pharmaceuticals are welcome; patients value informal ‘chat’ with someone who would more readily understand key concerns about living with polypharmacy than doctors (the ‘medicines-facilitator’ in story 2).

The most surprising finding of our Storytelling Group was that stopping medicines through re-imagined medication review processes often escaped articulation. Addressing polypharmacy emerged as not only complex, but almost impossible to contemplate, even within a deliberately speculative methodology. The details of how a (re-imagined) review might foster deprescribing was not articulated at all (e.g., it was limited to medicines being ‘sorted out’ or stopped in a trial through a process of randomisation rather than interpersonal deliberation). This echoed our experience in clinical settings as ethnographers, where polypharmacy was rarely discussed, and lengthy medication reviews resulted in little or no change to participants’ medicines.

Developing Findings Into Project Outputs

We carried these findings forward into a further design-led approach, informed by critical and speculative design principles (Dunne & Raby, 2014), recognising that if the ‘honest conversations’ that our story-creators (and policy-makers (Department of Health and Social Care, 2023)) desire are to be realised in practice then a catalyst designed to enable such conversations may be needed. We envisaged a catalyst that challenges conventional thinking and seeks to deliberately provoke conversations that are currently difficult to have.

Building on the ‘What if ?’ exploratory tools, the storylines emerging from the Storytelling Group workshops and our encounters with patients and professional in our ethnographic research, NF and DS crafted a collection of seven fictional stories exploring the everyday practices, ethics, emotions, and uncertainties inherent in polypharmacy as it plays out for patients, families, carers and professionals. We grounded these stories in our ethnographic observations and encounters with patients and professionals in the field, then integrated findings from the Storytelling Group workshops, foregrounding storylines which resonated most strongly with the wider ethnographic research (Figure 3).

Figure 3.

Presents an illustration of the methodological approach adopted throughout our research process.

We added discussion points which invite readers to empathise and engage with the characters; and reflect on whether and to what extent the concerns expressed by the characters resonate with their own experiences of polypharmacy. We sought to strike a careful balance between the grounded realities of our research participants affected by multimorbidity and polypharmacy, and the inherent potential of fictionalised accounts to explore possibilities which are plausible but lie beyond contemporary realities. We also sought to stimulate shifts in perspective, invite critical evaluation and spark new conversations, thus bringing into articulation a complex phenomenon that our participants struggled to articulate. Reflecting our intention to spark new conversations we entitled the collection “Let’s Talk Differently About Medicines” (Figure 4) and produced a website and audiobooks (https://www.medicinestalk.co.uk/). Each narrative portrays different characters’ experiences with their health, medicines, healthcare providers and the healthcare system.

Figure 4.

“Let’s Talk Differently about Medicines”, booklets (Photo credit: Hyperkit).

These booklets are intended to function as interventions. Designed to fit conveniently into a pocket or purse they could be disseminated in community story-sharing events or in the waiting area of a general practice or community pharmacy to promote collective reflection and dialogue. The focus on ‘story’, not ‘information transfer’ is key. Stories are well-established as a health improvement tool; they travel readily, promote collective reflection and enable complex ideas to take hold by engaging people’s curiosity, emotions and imagination (The Health Foundation, 2015). Aligned with previous research on patient storytelling (Gucciardi et al., 2021), we propose a dialogic space that fosters collaborative meaning-making (e.g. organised reading groups) enabling individuals to share personal experiences and rehearse questions or concerns before speaking with healthcare professionals.

User-Experience Testing

A prototype of “Let’s Talk Differently about Medicines” was peer-reviewed by research colleagues (www.apollosocialscience.org) and user-tested by 13 older participants. The user-testing process was led by EvB, a medical anthropologist. The evaluation encompassed readings, individual interviews (n = 7), and one focus group (4 participants) to gather insights and feedback. The resource was also tested in a community reading group supported by a charity for older people. This user-centric approach allowed refinement of the resource to ensure cultural and contextual appropriateness (Buchanan, 2001; Schön, 1983).

We assessed usability, functionality, and the effectiveness of speculative elements in stimulating conversations about polypharmacy. Participants described the resource as engaging, interesting, and joyful, and connected with the stories on a profound level. The narratives, perceived as ‘visceral’ and ‘true to life’ resonated with participants’ personal experiences of polypharmacy, prompting reflection. Participants valued learning about ‘polypharmacy’ (an unfamiliar term) through the understandings and actions of some of the protagonists. This contrasted favourably with traditional information leaflets (described as ‘cold’ and ‘impersonal’). Participants related to characters, shared the stories with friends, and reflected on the discussion points. They suggested adjustments to character profiles to avoid stereotyping.

We were particularly interested in exploring how the interplay between reality and fiction was interpreted. In one of the more speculative stories this interplay led to some confusion, prompting us to reflect more carefully on the proximity of such speculative ideas to real-world possibilities. Participants seemed primed to interpret speculation about polypharmacy using the language of medication adherence – although we intentionally steered away from this framework through our stories. This rendered the value-laden context in which older adults usually understand and discuss their medicine-taking even more tangible – and reinforced the importance of producing a catalyst to talk differently about medicines. We amended this particular storyline, reframing it more clearly as a form of speculation by adding a potential dream-scenario. In contrast, users interpreted other storylines that arose directly from ethnographic observations as speculative. The stories served as carriers of ambiguity situated between the ‘real’ and the ‘imaginary’, provoked discussions around ‘what is’ and ‘what might be’, and stimulated reflexivity and (re-)imagination of alternative futures.

Discussion

The aim of our co-design project was to invite experts-by-experience to re-imagine the medication review in ways that more readily facilitate de-prescribing in the context of polypharmacy, so that we could design a patient-centred resource to improve practice. The Storytelling Group approach was effective in supporting the development of detailed imaginative narratives, enriched by participants’ experiences and their aspiration to improve quality of care and prescribing safety for older people. The group created stories that embraced the complexity of polypharmacy, including the inter-relationships between patients, family, carers, clinicians, medicines and care systems. Participants’ (and created protagonists’) emotional connections to their social networks and their medicines featured strongly. This was not surprising; it is well known that storytelling approaches in healthcare improvement initiatives are effective in engaging curiosity and emotions (The Health Foundation, 2015).

Our methodology introduced a unique role for experts-by-experience as story-creators which was unfamiliar to them despite substantial experience of Patient and Public Involvement and Engagement (PPIE) activities. This was well-received by participants but posed certain challenges. For example, we were surprised that despite story-creators’ enthusiastic engagement, their commitment to reducing patients’ burden of medicine and the creative liberty offered by our approach, only two stories resolved with a reduction in medicines. Even then, the details of how this was negotiated remained opaque and neither example occurred within a GP surgery where most medication reviews occur.

This finding prompted us to reflect on the tasks usually asked of experts-by-experience within PPIE activities. Often these activities adopt a rather reductionist approach to lived experience in service improvement and health research (Oertzen et al., 2022; Thomson, 2023). Our participants’ previous involvement in providing feedback in research contexts was more typically evaluative in nature (i.e., an invitation to act as critic) or focussed on ‘problem-solving’ in situations in which the ‘problem’ being solved is more readily definable. The invitation to engage in a speculative exercise around a ‘wicked problem’ like polypharmacy was novel, even though the key site of our proposed intervention, the medication review, was familiar. Participants readily articulated character development, the complex demands of aging and managing multimorbidity. These contributions were beneficial but not in the ways we originally envisaged. We reflected on the dynamics at play between researchers and experts-by-experience in participatory practices, especially how these are often driven by the demand for accountable and impactful research (Phillips et al., 2013; Walshe & Davies, 2013). Arguably the evolution of practices of patient involvement into a policy imperative, influenced by neoliberal governance and performance management trends in research (Ball, 2001; Komporozos-Athanasiou et al., 2022) can overshadow how researchers typically engage with public contributions. Governance frameworks designed to empower participants may – at the same time - place limits on the nature of their contribution and on what it is possible to achieve or produce. Exploratory and creative design-led methodologies depend crucially on broader interpretations of participation and on the possibility to push creative potential to maximise the value of collaborating with patients and publics (Thomson, 2019).

Perhaps we should have been less surprised by this unintended outcome? After all, we have framed polypharmacy as a wicked problem (Swinglehurst & Fudge, 2017) and our previous research has illuminated the challenges GPs face as they navigate polypharmacy in medication reviews (Swinglehurst et al., 2022). One of the characteristics of wicked problems is that they do not lend themselves to ‘solution’; Rittel and Webber argue that ‘social problems are never solved. At best they are only re-solved – over and over again’ (1973). Indeed, our approach underscores the vital role of engaging patient participants as co-designers in uncovering deeper, hidden aspects of the ‘problem(s)’ at hand, including those that we had not anticipated. Our findings offered unexpected insights into the gap Rittel identifies between ‘what is’ and ‘what ought to be’. First, experience of ‘what is’ may not equip patients well to imagine stopping medicines at all. This resonates with our previous finding of participants regarding their medicines as an inevitable non-negotiable aspect of their lives (Swinglehurst & Fudge, 2021). Second, the possibility for ‘what ought to be’ may lie beyond medication reviews as currently practiced. Delivering on ‘what ought to be’ may demand shifting - or at least extending - the communicative context of medication review processes into non-clinical spaces, more readily accommodating ‘informal’ conversation (‘chat’) or involving a different kind of professional in the process (e.g. the non-clinical ‘medicines-facilitator’ who was regarded as more capable of empathising with patients’ everyday realities with their medicines than most GPs). Calls for more ‘honest’ or ‘realistic’ conversations, found in both health policy (Department of Health and Social Care, 2023; National Institute for Health and Care Excellence, 2016; NHS England, 2021) and patient-led campaigns (Me & My Medicines, Medicines Communication Charter, It’s OK to Ask – Home, 2024) about medicines optimisation may be a difficult ask, not because people do not want to engage in such conversations (they do) but because the conditions to support such conversations (e.g. where and when they may occur and who they may involve) may need more radical re-thinking.

We were thus challenged to consider how as researchers we might contribute to such a shift in conditions or possibilities, accepting that any interventions we propose will necessarily be partial. The key problem does not appear to be an information-deficit, nor lack of willingness by patients or clinicians to address polypharmacy, but difficulties in the communicative context. In developing the stories for Let’s Talk Differently About Medicines, we decided to lean more heavily into the potential of narrative to incorporate imaginative interpretations and spark new ways to discuss a subject which is difficult to discuss. We created a resource in which the storylines are firmly grounded in our ethnographic research findings (i.e. practice-based evidence) whilst incorporating design’s receptivity to display such knowledge in ways that enable a deeper understanding of the ‘subject’ and provoke further interaction (de la Bellacasa, 2011; Gaver, 2012). The story booklets are not simply distribution materials designed to educate, but tools to provoke shifts in conversational context and shifts in how the ‘problem’ of ‘problematic polypharmacy’ is conceptualised, supplementing more conventional ‘information’ resources.

In summary, we have demonstrated the potential for novel epistemic and design methodologies within healthcare improvement, especially when there are complex issues at stake which may be difficult to articulate and resolve. Designers are not merely facilitators but active agents, trained to identify design opportunities and potential intervention points through their capacity to envision, experiment, and propose future and alternative possibilities. This disciplinary contribution is invaluable in the iterative journey from conceptual ideas to tangible prototypes and, ultimately, to potential interventions. Deliberate engagement with speculation is - when conducted with care – a way to reconceptualise complex problems and uncover innovative ways of addressing them. We could easily have regarded the difficulties our participants had in creating stories in which polypharmacy was resolved as a ‘failure’ of the Storytelling Group technique. Instead, it prompted us to reflect more deeply on how we had framed the problem, the nature of the participatory practices we were engaged in, and the possibility of progressing towards more transformative interventions. Our output, Let’s Talk Differently About Medicines is now ready for proof-of-concept testing and further evaluation.

Footnotes

Acknowledgements

We wish to thank the patients and staff who took part in our research, members of our Expert Advisory Group, our patient and public engagement panel and members of PenPEG (Peninsula Public Engagement Group). We also wish to thank QMUL’s Royal Literary Fund Fellow, Elizabeth Cook and members of the APOLLO social science research group () who provided feedback on early drafts of the stories, Camille Aubrey (our Storytelling Group illustrator) and everyone who took part in our user-experience testing.

Author Contributions

DS designed the APOLLO-MM study and secured funding. DS, NF, AT designed and delivered the co-design study. All authors contributed to gathering data. DS and NF wrote fictional stories in Let’s Talk Differently About Medicines. EvB conducted user-experience testing. AT wrote the first draft of the paper. All authors commented on, revised and finalised the manuscript. DS is the guarantor.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This article presents independent research funded by the National Institute for Health Research (NIHR) through a Clinician Scientist Award CS-2015-15-004 (DS). Additionally, this research was supported by the NIHR ARC North Thames. The views expressed in this publication are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Ethical Statement

ORCID iDs

Alison Thomson

Nina Fudge

Esca Van Blarikom

Deborah Swinglehurst

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Addressing Polypharmacy: Developing Public-Facing Resources Through Storytelling-Based Co-Design

Abstract

Keywords

Introduction

Methods

Findings

Developing Findings Into Project Outputs

User-Experience Testing

Discussion

Footnotes

Acknowledgements

Author Contributions

Declaration of Conflicting Interests

Funding

Ethical Statement

ORCID iDs

References