The key touchpoints, improvement priorities and ‘outcomes’ for each service are described below.
Breast and lung cancer patients identified similar touchpoints at particular moments along the patient pathway. Tables 1 and 2 illustrate how these touchpoints translated into tumour-specific improvement priorities and the subsequent improvement ‘outcomes’. Both patient groups reported very positive experiences in radiotherapy and chemotherapy which did not result in improvement priorities or co-design groups and are therefore omitted from the findings.
Receiving a diagnosis
Receiving a diagnosis was an important touchpoint for all patients. Breast cancer patients remarked on a heightened sense of anxiety before their cancer was confirmed. Conversely, lung cancer patients spoke about not expecting a lung cancer diagnosis as many presented with ‘just a cough’. Both patient groups spoke of the importance of a diagnosis being communicated sensitively and a need for support immediately after diagnosis which is person-specific, delivered by a healthcare professional and allows time to process the information.
I was told I had cancer but nobody gave me any information. So it’s really weird when you go home and you say this to your husband, and he says, ‘Well, what does it mean?’ And he’s completely dependent on your slightly garbled account. They don’t give you too much information because they know you won’t take it in, but then of course straight afterwards you wish you did have all this information. (Breast04)
I would have really appreciated more time and personal contact with the clinical nurse specialist. It was left to the ward staff who were busy with other things. I felt it was a bit awkward. (Lung06)
This touchpoint became a co-design working group only in the lung service, where patients and staff worked together on implementing three specific improvements (Table 2).
Being an inpatient
Inpatient experience was a touchpoint for both patient groups but breast cancer patients spoke less positively about their experiences—reporting a lack of psychological support, ‘feeling neglected’ and unfriendly staff. Breast cancer patients felt that specialist cancer wards would have offered staff greater knowledge of their disease and psychological needs.
What I did after a while was I didn’t really give myself morphine when I wanted it on the pump because I became too scared of what was going to happen if I wasn’t fully in control, and I don’t think that helped my recovery. (Breast09)
Mostly, they were admitted to general day surgery or surgical wards and, unlike lung cancer patients, treated in day surgery. Many described this as disorganised and chaotic, noting particular issues such as being separated prematurely from family and friends in the waiting area and feeling vulnerable in mixed-sex facilities. Lung cancer patients undergoing surgery were admitted to specialist cardiothoracic wards and largely reported more positive inpatient experiences.
Day surgery was identified as a priority for improvement at the breast service co-design event. Several improvement outcomes arising from this working group are shown in Table 1.
Moving through the system
Continuity of care
The majority of patients reported feeling particularly vulnerable at certain points of the care pathway. Building relationships and establishing trust and confidence in healthcare professionals were particularly important for patients at these times. However, both patient groups spoke of a lack of continuity of care. Patients particularly highlighted the impact of having to retell their story to each new healthcare professional, in terms of both the process and the content of consultations. A lack of continuity eroded trust in the system as patients worried that things would be missed.
We saw four or five different doctors in oncology outpatients. What bothers me with that is that there’s the possibility to miss things whereas if there was continuity there, they would have a little bit more insight into what was actually going on. That worried me. (Lung04)
Continuity of care was identified as an improvement area at the lung cancer co-design event and several improvement outcomes from this working group were reported (Table 2).
Long waiting times stressful but justified
Long waiting times in outpatient clinics were a major touchpoint for both breast and lung cancer patients. However, patients felt long waiting times were justified if caused by other patients needing time with a healthcare professional.
…because of the stress levels…you can’t help but sit there worrying, especially if you’re waiting for results. And some people have to be dealt with longer than others; at one of my appointments, some person needed an hour of the consultants time, and I thought, ‘Oh, gosh, that could be me.’ So therefore you don’t moan and you don’t complain if you're sitting waiting. (Breast02)
Some patients suggested that this waiting time could be used more productively as an opportunity to offer more information:
Maybe that would have been a good opportunity for somebody to come and talk to the patients [about information/other services on offer]… because there is a lot of sitting around… a lot of wasted opportunities. (Lung01)
Issues related to outpatient clinics were identified at the breast co-design event as an improvement priority and Table 1 provides details of the changes made (some of which had a ‘knock on’ effect for the lung service—see Table 2).
Both breast and lung cancer patients talked about the importance of efficient administrative processes for appointments and moving between services, and how they experienced feelings of uncertainty and disempowerment when appointments and letters were inaccurate or delayed.
I had to phone and phone and phone…its upsetting, frustrating. You get the feeling that you’re just a number, you’re just somebody on the end of a list. (Lung04)
A review of administrative processes was instigated as an improvement priority for the breast service and changes such as more efficient appointment processes were implemented (see Table 1).
Understanding what is happening
Timely, clear, tailored information delivered personally by a healthcare professional (rather than via leaflets or books) was very important to all patients. Overall, both patient groups felt satisfied with the care and time spent with consultants and nursing staff.
…they spent hours, I mean literally hours, with us talking about the drug treatment that I was going to have, whether to have radiotherapy on both sides—I was really impressed with that. I never felt that they were under pressure, and they gave us all the information we could possibly want. (Breast05)
The surgeon explained everything to me. She went into detail, drew me pictures of what she was going to do…made sure I understood everything and I felt comfortable and reassured by this. (Lung07)
With the exception of diagnosis (see above), breast and lung patients were largely satisfied with the information received. However, both groups wanted more information at specific times in the pathway. Breast cancer patients expressed a need for more information about treatment side effects and what happens at the end of treatment. Lung cancer patients who had surgery expressed a need for more information about what happens after surgery.
I thought I would have had feedback after I had my surgery but I’ve had nothing. I’m waiting for the letters. No-one’s been in touch with me. That’s what they should give you before you go in for the operation—all the things that are going to happen to you. Do you have physiotherapy, why are you going to see a lung doctor, why are you going back to see the surgeon?… (Lung08)
The breast and lung co-design working groups both identified receiving information as a priority area for improvement. Improvements to the breast service are shown in Table 1 whilst improvements to lung service are shown in Table 2.
Participant reflections on the key characteristics of the approach
Following the ‘review and celebration’ meeting (stage 6), four staff and five patients were interviewed about their involvement in the EBCD process. Interviewees highlighted four key characteristics of the EBCD approach: patient involvement, patient responsibility and empowerment, a sense of community, and a close connection between their experiences and the subsequent improvements that were made.
In keeping with the philosophy underpinning the EBCD approach, participants confirmed that the high levels of direct patient involvement throughout the whole project had been a key feature of the work. Staff participants spoke of being ‘very moved by the fact that patients were being so honest … that was quite humbling’, ‘the constant feedback [being] really, really useful’, and ‘[needing] the eyeballing of each other to make it work’. Overall, participants commented on what was perceived as a significantly higher level of genuine direct patient and carer involvement (relative to other service improvement projects in which patients and staff had participated):
I don’t think as clinicians we can assume that we understand the patient experience of our service. I think we can feel that we may do, and we probably do. We have informal feedback from patients all the time about things that have gone well and things that maybe we can do better but if we want to really move forward and develop services that are truly patient centred, it is absolutely essential that we engage with patients and listen to their views about the services now and the service they want from us for the future.
Patient responsibility and empowerment
Related to the above characteristic, participants also spoke of how the EBCD process had given patients a greater sense of direct responsibility for the work and its outcomes (and as one staff member pointed out ‘they were doing our work for us!’):
One of the things that’s really good about patients being involved as well as staff is that you get to see both sides in a way that you can only do when you bring those two groups together. I think you could have a survey that you tick—I have done lots of surveys—I don’t think anything is happening necessarily with those surveys. I often feel that my experience isn’t reflected on there. I want to tick a box that’s not there. And this gave the patients a chance to say what was actually happening. (Breast09)
Sense of community
Key to the success of the project has been the strong relationship between patients and staff that has been built over time. This team or community aspect was remarked upon consistently by all those we interviewed:
…the patients are actually very supportive in the way in which they respond to the staff. That’s something that I found quite surprising about this as an approach. On paper, it might feel that it’s a bit confrontational, but the reality is that it’s very much about bringing about understanding between people who are coming at things from a different perspective.
The connection between experiences and improvements
The fourth and final characteristic is an important one, we believe, in terms of positioning EBCD in relation to other narrative-type approaches to improvement. It is the additional work that EBCD entails with regard to it also being an organisational development (OD) process (Bate and Robert 2007) that directly engages patients as well as staff in the design process from stories, through joint analysis and interpretation to implementation that distinguishes EBCD. Stories in themselves do not bring about change; it is the change process itself and the direct and active participation of staff and patients in it that produces implementation and action, and ultimately spread and sustainability. As one patient participant put it:
I was on the co-design group for communications and every meeting that we had, we would give our thoughts and we would be talking to our staff counterparts in a group and we would say, so and so wasn’t working and couldn’t we do this and couldn’t you do that?…putting forward suggestions…and the next meeting you would attend, it had already been implemented…so they were actually implementing things as we were going along, which was really positive. (Breast06)
The result of this ‘connection’ is, in our view, a much higher level of clinical engagement in the improvement effort than we have usually observed in other improvement projects, as suggested by the following quotation from another staff member:
And to have the doctors involved. I mean for the consultants to take time out to come and the senior nurses from outpatients to come in; it was a very big group and you know, wide group, so I thought it was very good.