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Powell J, Atherton H, Williams V, et al. Using online patient feedback to improve NHS services: the INQUIRE multimethod study. Southampton (UK): NIHR Journals Library; 2019 Oct. (Health Services and Delivery Research, No. 7.38.)

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Using online patient feedback to improve NHS services: the INQUIRE multimethod study.

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Chapter 5Conversations about care: interview study with patients and their family members to explore their perspectives on and experiences with online feedback about NHS services

Summary

There is little qualitative research on people’s experiences of providing and using online health-care-related feedback, ratings and reviews in different contexts. In this chapter we explore how and why patients and their family members provide and use online health-care-related feedback in the UK.

We conducted 37 qualitative semistructured interviews with people who had read others’ health-care service reviews and/or provided their own. A thematic analysis of the data was carried out, focusing on interviewees’ self-reported motivations for and experiences of reading others’ health-care experiences and sharing their own.

Interviewees described multiple overlapping motivations. In spite of this diversity, online feedback was persistently framed as a means of improving health-care services, supporting staff and other patients – conceptualised here as ‘caring for care’. The metaphor of engaging in a ‘conversation’ with health-care service providers was frequently evoked as the key mechanism through which online ratings, reviews and feedback could be used to improve health-care services.

Framing online feedback as ‘care’ opens up new ways of thinking about the meanings and consequences of these practices from the patient perspective, in the context of public health-care services and the NHS specifically. Moreover, it adds an important dimension to academic work on online feedback, which typically conceptualises ratings, reviews and feedback in terms of ‘choice’ or ‘voice’. We suggest that thinking of feedback in terms of ‘care’ and ‘conversation’ opens up productive ways of engaging with the sharing of health-care experiences online.

Introduction

This chapter explores the motivations, experiences and recommendations of people who have read comments about, reviewed or rated NHS health-care services online. This interview study was designed to illuminate how and why people provide and use online health-care-related feedback – an area in which there has been much speculation but little research.

Existing research on online patient feedback, reviews and ratings in health care rarely focuses on user perceptions and experiences, and the work that has been done on this tends to use relatively high-level questionnaire approaches.82 In contrast, we took an in-depth qualitative approach to analyse (1) people’s self-reported motivations for why they read about other people’s health-care experiences and share their own online; (2) their experiences of using a variety of platforms to do so, including the responses they received and the implications this had for them; and (3) their recommendations for how the NHS should deal with online patient reviews, ratings and feedback.

Online patient feedback is often used as a catch-all term to describe a variety of practices and technologies, with associated norms and expectations.125 Rather than attempting to provide a universal definition, we use the term loosely here to describe a range of practices through which people share their experiences of health-care services via one or more digital technologies. We include the intentional ‘feeding back’ of care experiences to health-care providers – either through the providers’ own systems or intermediaries – as well as comments, ratings and reviews shared on social media that may or may not be explicitly directed at a health-care provider but nonetheless are about them (e.g. experiences shared on Twitter or blogs). This intentional openness avoids excluding relevant practices that might not be straightforwardly considered reviews, ratings or feedback, but form an important part of the wider ‘digital patient experience economy’, within which these categories of experiential information sharing are embedded.126 It also enables us to develop an empirically grounded understanding of what constitutes online patient feedback in practice, from the perspective of patients and other service users.

The people we spoke to had shared their own or family members’ health-care experiences and/or read about others’ across a wide variety of social media [e.g. Facebook, blogs, Twitter, YouTube (YouTube, LLC, San Bruno, CA, USA)]; commercial (e.g. Yelp) and non-profit feedback platforms (e.g. Care Opinion); and NHS and other health-care provider websites (e.g. NHS Choices, general practice websites). This included experiences of a range of health-care services across the UK (e.g. primary care, mental health services, accident and emergency, maternity services). Unsurprisingly, given this diversity, feedback described different motivations, experiences and outcomes. Rather than describe these individual platforms in detail, we draw out key themes that cut across our interviews. In particular, we focus on how, from a patient perspective in the UK, online feedback is orientated towards improving care and conceptualised, ideally, as a form of conversation. Finally, we provide a high-level overview of research participants’ suggestions for how the NHS might better organise and respond to feedback.

Methods

We undertook 37 semistructured qualitative interviews with people who had used online platforms to provide and/or read other people’s feedback about health-care experiences. Participants were recruited through a range of mechanisms. A flyer about the study was posted on the project website and relevant social media sites. We drew on the professional network of project members (including our PCPRG) and colleagues to advertise the study as widely as possible. The organisation Care Opinion circulated the study to their users who had agreed to be contacted for research purposes. Through Google searches, the researcher (SK) identified bloggers and other individuals who had commented about their health-care experiences online and those with publicly available contact details were approached to be invited to participate in the study.

People who expressed an interest in hearing more about the study were sent an information sheet. Those who agreed to take part were interviewed in their own home or elsewhere if they preferred. Interviews were audio- and/or video-recorded with permission. Consent was sought on the day of the interview. Participants were later sent a verbatim transcript of their interview to review before final consent and copyright was agreed for publication of extracts from the interviews to be used online (e.g. for teaching or service improvement purposes and the INQUIRE toolkit). Data were stored according to the University of Oxford’s institutional data-governance requirements. This was non-NHS recruitment and ethics permission was given by the Medical Sciences Interdivisional Research Ethics Committee (reference number R47871/RE001).

Through purposive sampling, we aimed for a maximum variation sample127 that included different ages, sexes and ethnicity, as well as people who had used a variety of online platforms and had commented on or read about different health-care services (including primary, emergency, maternity, chronic and specialist services). Interviewing continued until data saturation on experiences of reading and providing online feedback about health was assessed to have been reached.128 This was assessed through an iterative process, with two researchers (SK and FM) reading, discussing and analysing the interviews throughout the data-collection process. See Table 12 for participants’ basic demographic information (age, sex, ethnicity, health condition and services). The boundary between patient and carer roles can be blurred and several participants identified with both roles: of the 37 participants, four people did not have health conditions themselves, but used or provided feedback in relation to more general issues or someone they cared for, and a further three people provided feedback both as carers and as patients.

TABLE 12

TABLE 12

Patient interviews: basic participant information (age, sex, ethnicity, health condition)

A topic guide was used to explore interviewees’ general use of digital technologies and their motivations and experiences of engaging with online health-care-related feedback specifically (see Appendix 17). Transcripts were coded using NVivo software. We adopted two inter-related approaches to analysing the interviews. Informed by framework analysis,129 we developed an initial frame for structuring the data focused on the research questions that the work package set out to answer. Based on this, we created coding reports on (1) interviewees’ self-reported motivations for providing, seeking, reading and using online feedback; (2) interviewees’ actual experiences of providing and using online health-care-related feedback; (3) the perceived effects that providing or reading online feedback had for their health and well-being, their families, other patients, health-care practitioners and services; and (4) perceptions and experiences of NHS platforms specifically, including relationships with health-care services and practitioners. The first three of these coding reports were broken down according to the platform used (e.g. Twitter, blogs, Facebook, Care Opinion) to pinpoint similarities and differences across the different technologies, as well as to pull out those that cut across them. At the same time, we drew on grounded theory techniques of constant comparison and deviant case analysis to pull out emergent themes across the corpus of interviews.130 This resulted in a number of cross-cutting themes, such as choice, feeling heard, anonymity and navigation. In addition, the researcher created a summary of each interview, focusing on interviewee background and experiences. We used this alongside the coding reports and thematic analysis to provide context and situate interview extracts.

Findings

We focus on three key higher-level categories that we developed through our analysis. First, we outline how interviewees’ overwhelmingly understood feedback as a means of contributing to, rather than undermining, the NHS. Second, feedback was framed as ‘conversation’, both explicitly and more subtly through the extensive use of conversational metaphors across the corpus of interviews. Third, interviewees spoke of needing to ‘navigate’ a fragmented feedback ‘landscape’, a process they described as complex and, at times, disheartening.

Feedback as improving and caring for NHS services

. . . there’s lots of reasons why I do it [provide online feedback]. It’s not just one. There have, in the situation that I described at the start, that was first and foremost to try and get a bloody answer out of them as about what was going to happen here next but, underlying all of this, was the sharing it with other people, letting other people know that they’re not alone and, hopefully, leading to change. But there’s been other times where my post has been purely to highlight good practice or to instigate change in some way.

INQ36, female, thirties, mental health

The excerpt above neatly encapsulates the complex set of factors that motivate people to rate, review or comment on health-care services online. Their starting point is their own or a family member’s care and they turn to the internet as a means of communicating some aspect of that experience, either frustrations about poor practice or recognition of good practice. At the same time, they share their experiences online because they want to help other patients and their families by warning or expressing solidarity with them or, crucially, through helping improve the relevant health service. Indeed, a desire to make a positive change to a specific service and the NHS more generally, in some cases at the national level, was a key motivation described by all our interviewees.

Many of our participants had a chronic health condition (sometimes rare conditions that needed specialist knowledge), had multiple health problems or were caring for someone. Thus, they had a long-term relationship with, and a sense of dependency on and commitment to, the NHS. However, less frequent health service users also expressed a sense of responsibility for the NHS, with interviewees seeing their experiences as a potentially valuable resource for informing practice and improving care:

The NHS fails, we fail, like we need the NHS to not only survive but to thrive and keep going and any feedback, certainly I’m giving and I know a lot of people in my position are, it’s constructive, not because we’re being critical but because we need this to work.

INQ16, female, mid-thirties, multiple long-term conditions

Our participants’ emphasis on feedback as a mechanism for improving care went beyond their own care and those of other patients using the same service; it included caring about the NHS and those who work within it as a valued public service. The use of online feedback as a means of caring for care – one of the few ways in which patients can enact care for the NHS – was particularly striking when interviewees spoke of providing positive feedback (something they did frequently):

And it’s really useful to practitioners. Because they feel like they’re doing the right, it helps you with your job satisfaction morale, it helps you looking at your practice and developing professionally.

INQ09, female, late forties, breast cancer

Furthermore, online feedback was seen as a way of publicly thanking staff, boosting morale, encouraging best practice and providing other patients with a positive signal about good care. Significantly, participants also saw their feedback as a valuable resource that staff might potentially use to promote, maintain or enhance the service they provided during a time of increased financial pressure and cuts. In this excerpt, the participant even makes it explicit how their feedback could be used by the Care Quality Commission (CQC):

I wanted to say thank you to the GP that, who’d been really, really good with me. And the way I did that was by e-mailing the practice manager and just saying ‘I’ve had this good experience, thank you’. Because I was hoping, I guess, that they could use that somehow with the CQC or something.

INQ22, female, mid-thirties, mental health and eating disorders

Even when critical of the care they had received, participants enacted care for the NHS in subtle ways, such as mentioning positive experiences alongside negative ones, protecting the identity of individual practitioners and acknowledging the multiple challenges the NHS faced. Although our interviewees did occasionally leave feedback in lieu of, or alongside, a formal complaint, they generally perceived it as distinct from the formal complaints process. In particular, the public and anonymised nature of online feedback were both regularly mentioned as key features that differentiated it from a complaint, which was generally perceived as needing to be dealt with privately and requiring individuals to be identified.

Although the online feedback left by our participants usually focused on specific services and experiences, some of the people we spoke to conceptualised the sharing of experiences of health-care services through online feedback as part of a wider ‘movement’ aimed at improving care through democratising the NHS and empowering patients. Thus, even if their online feedback did not have immediate effects or benefits for them or their family, they were motivated to provide it because they believed that they were, in the words of one interviewee, contributing to improving care ‘in a subtle and perhaps longer-term way’ (INQ18, male, late fifties, type 1 diabetes mellitus).

Although this focus on democratisation and patient empowerment was not platform specific, Twitter was frequently referred to as one of the best media for breaking down barriers between patients and health-care professionals, and was particularly valued as a conduit for engaging with high-level NHS representatives and policy-makers:

Patients should be listened to . . . you should ask people, who are using your service, what they think of your service. And it is something that I think is a growing movement, where people just aren’t happy that they are not being listened to anymore and it’s becoming a bit more equal between health-care professionals and patients . . . On Twitter you are on a level playing field and you can share your opinions as well as anyone else can.

INQ06, female, mid-twenties, hypermobile Ehlers–Danlos syndrome, mobility problems

With regard to reading online feedback, our participants valued being able to consult other people’s experiences. They said that it helped them to prepare for their own appointment(s) and treatment(s), assisted them in navigating the system and gave them a sense of what to expect. Much of the (primarily US-based) literature on online patient feedback, ratings and reviews has foregrounded it as a means of enhancing patient choice (for more information, see Chapter 2). Of course, choice may be more apparent in a US-style private insurance-based health system, but there is still rhetorical emphasis placed on choice in health policy discourse even within the NHS.24 However, the people we spoke to rarely said that reading online feedback influenced their own choices. Although they acknowledged that, in theory, other people’s experiences had the potential to inform choice, in practice this was rarely the case. This was contrasted with consumer services, such as hotels or restaurants, in which they felt that they did genuinely have a choice. Our participants’ perceived lack of choice was due to numerous reasons: the nature of the condition, with ‘choosing’ a service not being an option with acute and emergency situations; geographic region, with people in rural locations feeling that they had less choice than those in cities; the need for specialist care that was available at only a limited number of places; practical considerations, such as waiting lists, transport, work responsibilities and childcare; and a lack of the kinds of information that would enable them to make truly informed choices, most notably information about specific practitioners. Finally, some patients even reported feeling actively discouraged by health-care staff from making choices.

Feedback as conversation

Regardless of the specific technology used, conversational metaphors, such as being ‘listened to’ and being ‘heard’, were pervasive across our interviews, with participants frequently stating that they provided online feedback in the hope that they might, ideally, have a ‘conversation’ with the NHS. The metaphor of feedback as ‘conversation’ was more than simply a figure of speech; it constituted an overarching framework that structured understandings of what health-care feedback could and should be.

One key dimension of feedback as ‘conversation’ was being able to express your experiences freely through unstructured text. Our interviewees said that being able to share their ‘story’ in their own words enabled them to focus on the aspects of care that were important to them, rather than responding to predefined categories. They recognised the value of more structured formats, such as check boxes, but suggested that they were too restrictive to truly communicate health-care experiences on their own and ran the risk of being ‘tokenistic’. In other words, being able to ‘speak freely’ was not only seen as important for successful online feedback; systems that enabled health-care users to share their experiences in this way were seen as indicative of a genuine commitment to patient-centred care.

When it came to using others’ feedback, interviewees were familiar with online feedback, ratings and review technologies in other sectors, with TripAdvisor (www.tripadvisor.co.uk), eBay (www.ebay.co.uk) and Amazon (www.amazon.co.uk) being key examples. Yet, they repeatedly stressed that health care was a highly specific domain that should import practices from other sectors only after careful consideration. ‘Star rating’ systems were deemed to have some use (especially if comparing a large number of reviews or if users were able to rate different aspects of their care), but they were also critiqued as unable to capture the complexity of health care. Thus, numeric ratings were rarely seen as sufficient in themselves. Rather, they were juxtaposed and cross-referenced with free-text comments:

It’s [NHS Choices] a bit like an Amazon thing or a TripAdvisor thing where people can, you know, their view of the five-star model but everybody may have a slightly different interpretation. So I didn’t find that terribly helpful or comparable, but I thought a lot of comments gave me a flavour of what the patient experience was like.

INQ08, female, early fifties, osteoarthritis, hip replacement

A second key dimension of feedback as conversation was the question of audience and interlocutor: with whom did our interviewees think they were initiating a conversation with when providing feedback? Patients, carers and their families were generally seen as the primary audience for health-care experiences shared over social media, especially health forums and Facebook (although in some cases health-care practitioners did take part in these conversations, but this was usually in a limited form). Twitter and, to a lesser extent, blogs were often used to communicate with health-care professionals and service providers, including policy-makers and opinion leaders, while at the same time being accessible to the wider public. However, when our interviewees wanted to explicitly ‘feed back’ their experience to service providers and practitioners, they usually turned to either NHS websites – such as NHS Choices or local websites (these differed depending on the trust and/or service in question) – or third-party platforms, such as Care Opinion or iWantGreatCare.

In principle, our interviewees were happy for feedback platforms to be curated by third parties – some even preferred this – but they felt that there was insufficient clarity and transparency about who owned and moderated different platforms, their relationship to the NHS (an inherent part of it, an intermediary or a completely unconnected organisation) and who actually received the feedback they collected. Moderation emerged as an important and contested theme here. On the one hand, there was a preference for minimum interference in the interests of keeping the experience as ‘real’ and ‘authentic’ as possible. On the other, interviewees recognised that moderation work was needed for the feedback to be discoverable, readable and useable (see Ziewitz131 for more on online feedback moderation).

A third related dimension of feedback as conversation was the extent to which participants expected a response. The idea of a response had different meanings for our interviewees. For some, a response required an action on the part of the NHS (e.g. the resolution of a problem, an indication of intent to instigate change or the utilisation of feedback as a learning tool). A response might also communicate the next stage of the feedback process to ensure that people had clear expectations and an understanding of how their feedback would be dealt with. Regardless of the specifics of what constituted an appropriate response, our participants stressed the importance of feedback, including positive feedback, being acknowledged and for there to be transparency about who had received it and when. Moreover, our interviewees generally preferred individually tailored responses over generic ones, but there were cases in which they considered less personalised responses appropriate (e.g. to protect anonymity). Whatever the response, they felt that it should be timely, feel genuine, rather than formulaic, and that any promises should be followed through (see Baines and colleagues132 for similar findings).

Navigating the complex online feedback landscape

As already discussed, the people we spoke to saw online feedback as a valuable resource for health-care service providers, for themselves and for other service users. Furthermore, internet technologies were an integral part of our interviewees’ lives, with most of them being online throughout the day. Yet, despite this, many initially had little knowledge of where or how they could rate, review or provide feedback about the NHS, and few reported that health-care providers had offered any guidance or encouragement for them to do so (this echoes the survey findings reported in Chapter 3). In the majority of cases (the situation was different for our three Scottish interviewees who were aware of Care Opinion as the preferred feedback mechanism for NHS Scotland), our participants painted a picture of a fragmented and uneven feedback ‘landscape’ populated by both very good and poor practice. Thus, in contrast to the ideal type of feedback ‘conversation’, our interviewees’ actual experiences of giving feedback were divergent and often highly unsatisfactory.

The first challenge our interviewees described was deciding where (and by association to whom) to provide feedback. They often spent a considerable amount of time – searching the internet, speaking to family and friends, consulting other patients and health-care professionals – trying to source an appropriate avenue for sharing their experiences. Not only was this time-consuming and often frustrating, it could be disheartening, especially if they were simultaneously dealing with health problems and their wider consequences. Moreover, their confusion about how to provide feedback was increased by what they perceived as poorly designed NHS websites (e.g. those of particular trusts, hospitals, primary care practices), which often lacked clear signposting of where feedback could be left and who it would reach:

I think it’s impossible to know, in a lot of situations. The staff are not listed. The service leads are not listed. Contact details are not given, except for generic phone numbers, which takes you to the main switchboard. I think, in many cases, actually, it’s impossible [to provide feedback], I would go that far.

INQ15, male, 39 years, mental health and orthopaedic treatment

Depending on what information they found, their situation, preferences and, importantly, their intended audience (who they wanted to share their experiences with), our participants used one or more of a number of feedback systems. This included Care Opinion; NHS Choices; local Healthwatch; trust and general practice websites; the Patient Advice and Liaison Service (PALS); the Friends and Family Test; and inpatient surveys administered by NHS staff (e.g. to inform the CQC). Although social media are not feedback platforms per se, our interviewees often conceptualised the sharing of health experiences via social media as a form of feedback:

So people, you know, now rely more on social media for feedback than something you’ve constructed where it says, you know, please fill in this form and people don’t want to be bothered with that. So it’s much easier for them to go and post something on Twitter or even write a blog and post a link to it than sit there filling in a feedback form that wants your address and phone number and the like.

INQ01, male, mid-sixties, infrequent health service user

We indicated earlier that a key motivation for many people who provide online feedback is a desire to make a positive change to a specific service or to the NHS more generally. In cases in which interviewees expected some action to be taken, they expressed high levels of frustration and disappointment when they felt that no changes were made. This could be heightened when they were aware of cases in which others’ feedback had received a response, giving them a feeling that other people were being listened to in some situations by some trusts and/or service providers. Such negative experiences could undermine trust in the health-care system, as well as demotivate people from engaging with it in the future:

It’s dispiriting if you if you . . . something has gone wrong and you’ve kind of alerted them and there’s no sign that anything has changed or there’s no reason given as to why actually, that’s not that much of a problem, it’s just a one off for you, yeah, it’s dispiriting because you feel you can’t make any difference or improve things.

INQ17, female, mid-thirties, mental health services

On the other hand, there were examples when interviewees felt that sharing their experiences had made a very positive difference, either to their own care or to a service more generally. Experiences such as these could be transformative for individuals, radically changing their perception of a service and their relationship with the staff working in it. For example, after trying to access a particular treatment for over 1 year, one of our interviewees turned to Care Opinion with the following result:

I got a response pretty quickly, actually. I think it was within maybe 24 hours but maximum 48 hours and I got a response basically saying, contact us and we’ll look into it. And I did contact them and they did look into it and . . . the problem was solved and I’m now able to access the correct care and treatment that I was told wasn’t available at all, and never would be . . .

INQ36, female, late thirties, mental health services, NHS Scotland

However, cases such as this were contingent on the health-care service provider – usually via patient experience leads or other designated staff members – actually engaging with the platform, which differed between trusts, services and the NHS in different countries (i.e. England, Scotland, Wales and Northern Ireland). Interestingly, for those who used it, Care Opinion, which keeps track of who has received the feedback and the responses given, was seen not only as a way to leave feedback, but also as a mechanism for keeping track of how responsive different services were. In other words, seeing responses and actions recorded on Care Opinion had the potential to influence how patients and their families perceived the service in question.

Participants’ recommendations for how the NHS should manage online patient feedback

The researcher undertaking the interviews asked each participant if they had any suggestions for what might improve their experiences of NHS feedback systems. In responding to this, many people drew on their experiences of feedback processes in other industries and domains to demonstrate what they felt worked best:

Organisations that gather information and do it well respond to the comments and demonstrate that they do something about the issues and that encourages a virtuous cycle, doesn’t it.

INQ08, female, early fifties, orthopaedic services

Our interviewees had a number of suggestions that they felt would enhance their experience of NHS feedback systems. First, they wanted there to be a clear feedback process and to be signposted to a dedicated feedback platform, where they could post their own feedback, receive responses and read other people’s comments:

[I]f they had their own little part of the internet that I could go on and say, ‘Look, you’re failing in doing this’. It would, I would love it, even if I went on every day and said, ‘Look, once again, this has happened’. Or, even if I went on once a year, I, to know that they’ve got their own platform that they’re reading . . . people from the trust taking note of what’s being said because I don’t think it would be abused, in that everyone is just going to go on and start slating them. I think, I don’t I don’t think that would happen really but if my trust did have that sort of platform, then I’d definitely use it and I’d definitely feel a lot more heard.

INQ19 female, early thirties, mental health service user

Although our interviewees’ expected audiences to include other patients and service users, as well as health-care staff, they expected feedback directed at staff to be acknowledged, taken seriously and (when appropriate) acted on. As outlined above, the response sought by our interviewees had the form of a ‘conversation’ involving the exchange of information and ideas, rather than a one-way mechanism for the reporting of a problem or positive experience. Concern was expressed when feedback was not responded to:

I’ve posted one or two on NHS Choice but my trust is particularly bad at ignoring them, so it seems pretty pointless doing that.

INQ20, female, mid-sixties, mental health and chronic back pain

The frustrations and difficulties people experienced when trying to give feedback were reflected in their recommendation that, as well as having more effective systems for collecting feedback, the NHS must improve the culture around comments, ratings, reviews and feedback:

When you say, ‘Oh we’d really like to know what your experience is’. You have to mean it and the only way that people really believe you mean it is if you do something with the information and then you tell them, you know, about the improvements that you’ve made . . . you just have to be, you know, willing, interested to listen.

INQ08, female, early fifties, orthopaedic services

Interviewees said that, from their perspective, the NHS did not always value online feedback or respond to it effectively enough. They recommended that NHS staff be trained to recognise the importance of online feedback, to embed it within their practices and for there to be mechanisms to ensure that specific feedback reached the appropriate teams and be translated into service improvement. They urged health-care professionals to regard negative comments as a learning tool. Equally, they thought that it was important that positive comments and feedback are used as exemplars of good practice and to boost staff morale:

I think it’s probably just like embedding it more and it becoming more an integral part of what they do . . . there’s huge potential to sort of just maybe ask more people and try and gather up more information and then you’re moving away from lots of kind of paper-based stuff, so it should be easier for people to analyse it and try and find themes and things, so they can help improve services.

INQ25, female, early thirties, Ehlers–Danlos syndrome and other chronic health conditions

A few of our interviewees highlighted examples of when they felt that NHS staff were genuinely trying to engage with patient feedback, either through a specific feedback platform or via social media:

@WeCommissioners and they run Twitter chats every week with a different focus and it creates such a platform levelling out having direct contact to people, you know, you, you can be tweeting with a patient, you can be tweeting with a, you know, chief exec [chief executive] of the NHS . . .

INQ09, female, late forties, breast cancer

These initiatives were valued and seen as indicators that NHS staff working at different levels and with different functions were taking patient feedback seriously and, in cases such as the example above, actively working towards democratising the NHS. There was widespread recognition that responding to online feedback consistently and systematically across the NHS would require considerable resources and create additional work for health-care professionals. Although our interviewees felt that the NHS had an obligation to engage with, and respond to, feedback provided via their own websites and platforms, such as NHS Choices, Care Opinion and iWantGreatCare, they expressed different opinions about how much and in what ways the NHS should draw on social media. A few felt that relevant social media platforms should be regularly monitored:

[T]he monitoring of social media by NHS organisations is, would be a really good thing . . . it’s very direct feedback. It’s feedback that everybody can access and I think an organisation these days, a health service organisation, as some do, needs to work out how they respond to that social media comment . . . I think it’s beholden on the NHS to have a strategy to deal with a better informed set of customers than previously was the case.

INQ01, male, mid-sixties, infrequent health service user

However, this was not a universal sentiment. There was widespread recognition that monitoring social media was unlikely to be feasible given staff and resource constraints and that a significant amount of social media content (especially on patient forums and Facebook) was not aimed at health-care practitioners and services, but intended for patients and their families. One important exception was Twitter, which was seen as a ‘public’ platform that the NHS should keep track of and respond to. Twitter was particularly valued as a ‘real-time’ source of information as opposed to more traditional modes of collecting feedback through surveys and questionnaires:

I think they should pay, you know, serious attention to Twitter. So if you see, if you see a photo of a toilet or an area, which is in a very bad state, I think that should be taken seriously and they should they should do something about it . . . One of the great things about social media on the flip side is that it’s real-time stuff, you know, instantly, you know, tells you what’s going on not in 7 days or in a year’s time, so it’s now, so the good thing is that things can be done if there’s a problem.

INQ15, male, late thirties, mental health and orthopaedic services

Discussion

As we have already shown in Chapter 3, although only a relatively small number of people rate, review or provide feedback on their health-care experiences online in the UK, many more seek out and read this type of feedback.77 This means that those who do choose to share their experiences online can have a powerful influence on public and patient perceptions of a particular service. Considerable concern has been expressed about the negative potentials of this influence, especially by doctors (see Chapter 4 and Menon133). However, research shows that online feedback is not dominated by disgruntled service users and complaints.26,77 Rather, as we have elaborated throughout this chapter, people’s motivations for, and experiences of, providing and using online feedback are complex and multifaceted.

This complexity and variation notwithstanding, our research participants consistently framed their provision of online feedback as a means to improve and support, rather than to criticise or complain about, health-care services. At the same time, they found the landscape of online feedback a fragmented one that is difficult to navigate. Based on their desire to contribute to the service, we suggest that online feedback should be understood as one of the rare ways that patients and the public can perform care for the NHS. What we have conceptualised as caring for care reflects a particular orientation towards health-care services in which users, even when voicing complaints, expressing disappointment or anger, do so as a means of improving health-care services, supporting (rather than undermining) staff, other patients and their families. This is significant for a number of reasons. An emphasis on online feedback as care (as opposed to dominant alternatives such as ‘choice’ and ‘voice’16) foregrounds specific relations and moral commitments,134 in this case people’s symbolic association with, and actual relationship to, the NHS and particular services within it. Furthermore, understanding online feedback as a form of care recognises that digital technologies are now a part of, rather than standing outside, contemporary health care.135 Finally, and importantly, the notion of caring for care brings the mutuality of care to the fore, prompting further questions and research about the different ways that patients and publics perform care for their health-care services (e.g. through campaigns, volunteering, bequests and donations, and so on).

An important way in which our participants saw their feedback, ratings and reviews as having the potential to enact care was through ‘conversation’, with frequent references to ‘talking’, ‘being listened to’ and ‘feeling heard’. As with the emphasis on care, the metaphor of feedback as ‘conversation’ was significant, as it foregrounds the highly specific and relational aspects of online experiential information sharing. This ‘conversation’, of course, had particular characteristics. It typically involved multiple audiences (health-care service providers and professionals, other patients and their families), was usually public and often anonymous (at least on the part of the patient or service user) and was enabled through free-text, as opposed to check boxes and ratings. Certain technologies were seen as facilitating different kinds of conversation; for example, Twitter was framed as a ‘leveller’ that was especially effective at breaking down traditional power hierarchies within health care.

Strengths and weaknesses of the study

As far as we are aware, this is the first qualitative study to explore patients’ and their family members’ actual experiences of reading and writing online feedback about the NHS. Moreover, in recruitment, data collection and analysis we paid particular attention to perceptions and practices of providing online feedback, a difficult area to research that has, to date, been overlooked. A key strength of the study is that it explores online feedback as a complex, multifaceted and situated phenomenon. This has enabled us to generate new ways of thinking about online feedback in the context of public health-care services in the UK, most notably through (1) proposing that online feedback is understood as a way in which patients and publics enact care for their health-care services and (2) unpacking the metaphor of feedback as ‘conversation’.

Clearly, as with any qualitative study, our findings are not statistically generalisable. We aimed for a maximum variation sample. We were able to recruit across a range of health-care services and platforms (including all major feedback platforms). We also managed to recruit older participants, people caring for family members and those from ethnic minority backgrounds. However, our sample is skewed towards women (n = 25) and we struggled, in particular, to recruit younger men. This may be a reflection of who provides feedback online and/or was influenced by our recruitment methods. Our sample was also dominated by people experiencing long-term interactions with the health service, often with chronic conditions, and we have less to say about feedback on single acute episodes. Furthermore, more detailed research is required on how different groups provide and use, or do not provide and use as the case may be, online feedback.

As this was an initial exploratory study, we were not able to examine differences between platforms, conditions and/or types of services, regions or the four countries (England, Scotland, Wales and Northern Ireland) in any depth. More research is needed on the relationship between platforms and online feedback, for example on how platform structures and affordances shape the feedback provided and the effects that it may have. Similarly, further research is needed on how the approaches adopted by different national health services shape online feedback practices, expectations and experiences.

Conclusion

Despite our interviewees wanting to engage in ‘conversation’ with the NHS, in practice they often struggled to do this. As well as the challenges they encountered in knowing where and how to feed back, they often felt dissatisfied and frustrated with the response(s) or lack of response that they received. When interviewees found ways to develop the conversations about care that they wanted, they felt that they were able to make changes to their own health care, that of other patients and as a service more generally. In such cases, their relationship with the health-care service provider was often strengthened and, in some cases, even transformed through online feedback processes. It is widely acknowledged that online patient and service user feedback has the potential to play an important role in improving health-care services. In this chapter, we have added to this by showing that, from the perspective of patients and their family members, the appropriate management of online feedback constitutes a service improvement in and of itself: communication as instead of simply for service improvement.

Copyright © Queen’s Printer and Controller of HMSO 2019. This work was produced by Powell et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK.
Bookshelf ID: NBK549387

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