Divided perspectives on shared decisions


11.05.2020

Since mid-2019 Concentric Health has been collaborating with UWTSD's ATiC, an integrated research centre with a focus on user-centred design and innovation. Caroline Hagerman, UWTSD Innovation Fellow, takes us through some learnings from interviews with patients and clinicians about the process of surgical decision-making. In this post, she explores the disparities between clinicians’ and patients’ experiences of the decision-making process, and some approaches to tackle the problem. Insights from the research are guiding how the Concentric product develops over the coming months.

Divided perspectives on shared decisions by Caroline Hagerman, UWTSD Innovation Fellow

Let’s say that you’ve recently learned that you might need surgery, and are due to have a consultation with a surgeon. You don’t know much about your options and are uncertain about which is the best option for you. You probably also have little understanding of what the surgery will be like, or what to expect during your recovery. What would you like to happen in your consultation?

It’s likely that you’d want the surgeon to make you feel comfortable, be interested in you as a person, and have your best interests at heart. The surgeon would carefully take you through your options, helping you to consider them in the context of your life. Ideally, you’d have a great conversation, with questions being asked from both sides, and maybe even a joke shared. By the end of the consultation you’d feel that you understood your options and had a feeling for which one you’d pick, but felt empowered to learn more and reflect over the coming days or weeks.

Challenges, on both sides

It quickly became apparent, from conversations with both patients and clinicians, that the ideal consultation as laid out above is rarely the reality. Both groups spoke passionately about the challenges standing in the way of such ideals. Some were shared challenges, whilst others were apparent to only one group. This blog explores these challenges and their impact on surgical outcomes, and we’ll finish by discussing how we’re tackling the problem with a re-imagined digital consent and shared decision-making platform.

First, a quick note on our process. We performed semi-structured interviews with patients who’d recently had surgery, and clinicians who routinely lead surgical consultations. We explored their experiences and perceptions of shared decision-making, consent, and the surgical journey. Our participants were from across the UK, and spanned a wide range of ages. We focused on treatments in NHS hospitals rather than private practices.

Let’s start by considering the consultation from the patient’s side. Consultations are often time-constrained, which means that clinicians focus on giving key information, with little opportunity for shared exploration and reflection. To some patients, this can feel as though the clinician doesn’t see them as an individual or particularly care about their needs, feelings, and priorities. Even though this is almost certainly far from the truth, the system often leads to a feeling of being neglected, and in extreme cases, misled. A second challenge for patients is a lack of support between consultations and prior to surgery. Patients reported feeling that the system didn’t help them to understand their surgical journey, ask questions, and reflect outside their allocated consultations. In some cases, this leads to them feeling unprepared and powerless.

Clinicians spoke of the challenge of getting their patients to engage with decision-making and their surgical journey. They acknowledged that they often find it difficult to share the right information, at the right level, for individual patients. Information must be given at a certain level of detail, but this can be hard to mesh with patients’ level of interest and knowledge. Though all the surgeons we spoke to sometimes find it hard to engage patients, they have different reactions to the problem. Some described spending more time than they had planned to, painstakingly discussing with the patient and trying to understand their needs and attitudes. Others admitted to simply accepting that some patients didn’t seem interested in understanding the surgical journey, and therefore not trying as hard to encourage engagement than they once did. All clinicians we spoke to expressed a lot of regret that they weren’t having these ideal conversations with patients, and knew that they resulted in worse outcomes, and even legal risk in extreme cases.

To summarise, we learned that system factors – few appointments and a lack of time, tailored information, and support resources – are interpreted differently by patients and clinicians. Despite clinicians’ attempts to help each patient to the best outcome possible patients can feel neglected and like a number, rather than a person. It’s clear that there is a long way to go in breaking down barriers between patient and clinician, and supporting their conversations and sharing of knowledge.

Reflection and support

Throughout our interviews with patients, we heard of the lack of mechanisms for support and reflection for those embarking on surgical journeys. Whilst some were aware of the unmet need at the time, most realised during their recovery that their expectations were unrealistic, or that they had reflected very little on the right course of action and the support that they would need.

As patients, we often need time, space, and support to engage with and understand our options and their likely impacts on our lives. Crucially, this support can look like a variety of things, and different combinations will suit different people. Quality conversations, akin to the ideal described earlier, can reassure and guide. Conversations with others who had been in similar situations, rarely available to those in our cohort, were highly valued and were a trigger for meaningful reflection. Time and space, combined with the tools to learn more and ponder at our own pace, reduces the likelihood of us having unexpected surprises - and a feeling of being misled - during our recovery.

From insights to impacts

Insights from our interviews are guiding how the Concentric platform develops over the coming months. The product’s initial focus was on digitally transforming the consent process. These interviews have shown us a clear opportunity to help build stronger connections between clinicians and patients. We’re developing features to help patients to access appropriate information about their care, ask questions, get a wider range of perspectives on their options, and reflect on what is to come. Our aim is for the application to be a facilitator for improved relationships between patient and clinician - not a technology wall between the two but rather a shared space for mutual understanding, learning and reflection.

Something caught your interest? Let’s continue the conversation by emailing me on c.hagerman@uwtsd.ac.uk.

Acknowledgements

The collaboration between Concentric Health and the Assistive Technologies Innovation Centre (ATiC) is supported as part of the Accelerate programme. Accelerate is co-funded by the European Regional Development Fund, through the Welsh Government.

Further Information

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