Using patient stories to improve quality of care
In Australia, the New South Wales (NSW) Department of Health has embarked on a number of clinical redesign projects to improve the effectiveness of hospital processes and the experiences of care for patients and families.
- This article has been double-blind peer reviewed
- Figures and tables can be seen in the attached print-friendly PDF file of the complete article found under “related files”
Gullick, J., Shimadry, B. (2008) Using patient stories to improve quality of care. This is an extended version of the article in Nursing Times; 104: 10, 33-34.
The aim of this study was to identify processes of hospital care requiring either quality management or clinical redesign. This qualitative pilot study carried out semi-structured interviews with 11 inpatients and five carers. Data was analysed using the Picker domains of experience. Positive dimensions included fast access to reliable healthcare, effective treatment from trustworthy staff, and involvement and support for patients’ families. Negative dimensions included a lack of comprehensible information, coordination and continuity of care, and poor attention to physical and environmental needs. Patient stories revealed positive perceptions surrounding access and clinical competence, although participants were often distressed by ineffective communication and coordination of care that failed to focus on the individual. It appears clear that patients and families should be included in collaborative co-design of care.
Janice Gullick, PhD, MArt, BFA, RN, CFCN, is clinical nurse consultant, department of cardiology, Concord Repatriation General Hospital, New South Wales, and clinical associate professor, faculty of nursing and midwifery, University of Sydney; Brian Shimadry, BNurs, Grad Dip Emerg Nursing, is clinical nurse consultant, department of emergency medicine, Concord Repatriation General Hospital, and consultant, performance improvement department, New South Wales Health.
In Australia, the New South Wales (NSW) Department of Health has embarked on a number of clinical redesign projects to improve the effectiveness of hospital processes and the experiences of care for patients and families. Two such ventures, the Statewide Cardiology Project and the Patient Flow Project, focus on efficient movement of patients from one hospital department to another by restructuring operational processes. The latter project also aims for timely discharge using a hospital-wide, multidisciplinary approach to discharge planning. The search for solutions to common patient flow problems has used many sources of data for analysis such as length of stay, admission and discharge trends and readmission rates. What is different in our approach is the use of patient and carer stories to pinpoint those issues that have meaning for people who use the hospital system.
The first aim of this study was to find those key events in the experience of hospital admission that stand out as meaningful to patients and families. The second aim was to test the practicality of the Picker dimensions of experience (Coulter et al, 2005) for ongoing quality monitoring.
There is a rich tradition of using patient narratives for nursing research into lived experience (Robinson, 2005; Leidy and Haase, 1999; Benner, 1994). There is further scope to use the richness of qualitative interview data in quality improvement processes. The quality process EQuIP, commonly used internationally and by all hospitals in Australia, prescribes the collaboration of patients and families with health professionals in care planning (Australian Council on Healthcare Standards, 2006). A range of methods have been used to involve patients in this process.
Quantitative satisfaction surveys, although widely used as a measure of service acceptability, are limited in achieving quality improvement in healthcare. As a result, additional qualitative input from patients is advised (Consumer Focus Collaboration, 2001). Qualitative data has the power to highlight mismatches in perception of experience between patients and professionals. This was exemplified in a recent investigation into patient, carer and staff experiences in an inpatient stroke unit, where clinicians showed little insight into negative experiences of care and patients’ and relatives’ need for information (Morris et al, 2007).
Institutions have sought to include patients and carers in their quality processes with good reason - by giving patients choices and increasing their engagement in care, that care is more likely to be cost-effective (Wanless, 2002). The UK NHS has sought to make such inclusive partnerships standard through comprehensive changes in its approach to health policy and service delivery (Department of Health, 2005). An example of the benefits of patient inclusive co-design can be seen in the UK’s Cancer Services Collaborative Improvement Partnership (www.cancerimprovement.nhs.uk). This project has succeeded in dramatically improving information pathways for oncology patients. An Australian study tested a model for collaborative strategic planning for hospital resource allocation between patients, community members and healthcare workers. This demonstrated the importance of understanding people’s values in the provision of equitable and effective planning decisions (Alexander and Hicks, 1998).
Although methodologies such as phenomenology and ethnography elicit rich and detailed information, they may need more time and expertise than is available for quality monitoring. This article describes one method of engaging patients and carers in examining the inpatient hospital journey. Suggestions are made for using this knowledge to design care, with input from both staff and patients.
Between December 2006 and February 2007, a purposive convenience sample of 11 patients and five carers was selected across the specialties of emergency care, cardiology, geriatrics, general surgery, respiratory and haematology in an Australian public teaching hospital. These stories described a total of 12 hospital journeys. Their characteristics are outlined in Table 1.
Table 1. Characteristics and relationships of participants
|Participants interviewed (age)||Patient journey|
|Brian (70), and wife, Sandra||Chest pain, district hospital emergency department (ED), study hospital cardiac care unit (CCU)|
|Bruce (50)||Chest pain, ED, CCU|
|Florian (51) and wife, Hilde||Chest pain, ED, CCU|
|George (25)||ED, haematology|
|Jack (80)||ED, care of older people|
|Jan (81)||ED, care of older people|
|Jeff (52) and wife, Fiona||Chest pain, ED, cath lab, CCU|
|Kylie (44)||ED, inpatient surgery|
|Peter (64) and wife, Yasmin||Chest pain, ED, cardiac cath lab, CCU|
|Sally (38)||ED, respiratory|
|Tina (38) Father of Andreas (67) (not interviewed)||Chest pain, ED, CCU|
|Zena (60)||Elective surgery|
Interviews were conducted either face-to-face in the hospital or by telephone with speakerphones. A second person made notes on the patient stories during the interview. These notes were written up immediately after the dialogue and confirmed for accuracy with the lead interviewer. Interviewers were trained in qualitative interview techniques.
The project was reviewed by NSW Health/Cancer Institute joint ethics committee. All participants gave written consent for anonymised information to be shared with other health professionals. All names used in this report are pseudonyms.
Data for the 11 patient journeys and those of the five carers were analysed to determine those aspects of the hospital process that affected their experiences. A semi-structured interview tool (NSW Health, 2005) guided the interview process.
Analysis used the Picker criteria as the framework for examining patients’ experiences. Each experience was categorised as either positive, negative or neither against one of the nine valued domains of healthcare developed from research by the Picker Institute (Coulter, 2006; Coulter et al, 2005). These domains are:
Fast access to reliable healthcare;
Effective treatment delivered by trustworthy staff;
Involvement in decisions and respect for preferences;
Clear, comprehensible information throughout the journey;
Attention to physical and environmental needs;
Emotional support, empathy and respect;
Involvement of, and support for, family and carers;
Smooth transition to, and support for, self-care;
Continuity and coordination of care.
This categorisation allowed a focus on the most commonly described positive and negative domains to inform the process of clinical redesign. Where there were both positive and negative aspects in a patient story for the same domain, the aspect that seemed to most strongly affect the patient was chosen.
The results of this categorisation of patient and carer experience are shown in Fig 1, according to the frequency of their presence within patient stories. The three most positive dimensions of experience were:
Fast access to reliable healthcare;
Effective treatment delivered by trustworthy staff;
Involvement of, and support for, family and carers.
The three most negative dimensions were:
Lack of clear, comprehensible information;
Lack of coordination and continuity of care;
Lack of attention to physical and environmental needs.
A large number of dimensions in the patient stories were categorised as neither positive nor negative. This reflected the nature of the interviews as semi-structured, with the Picker dimensions used as a guide to data analysis rather than a guide for interview questions. The overall number of positive domains within stories (n=37) exceeded the overall number of negative domains (n=28) when categorised according to the Picker criteria. In general, the negative experiences were not due to a perceived shortfall in clinical competence, but arose from poor communication and approaches to coordination and care planning that failed to focus on the person.
Fast access to reliable healthcare emerged as the most frequently noted positive experience and was mentioned in nine out of the 12 journeys (75%). After Yasmin’s husband, Peter, presented with chest pain she explained: ‘The way I see it, when he was sick, they immediately took him in, they did the operation quickly-And this is what we want.’ Bruce recalled arriving at the hospital’s information desk feeling unwell: ‘They asked if I had chest pain. When I said I did, suddenly there were five doctors around me.’
With the exception of one surgical admission, all participants described a patient journey that began with a presentation at the emergency department. Half of these presentations were for chest pain. These patients receive a higher emergency department triage category that demands timely evaluation, and this may make them more likely to experience faster access to emergency care. All participants, however, portrayed their transition through the department in a positive way and praised the efficiency and competence of the emergency department staff. According to Jan, who was admitted under the geriatric team: ‘I arrived at the emergency department by ambulance-the ambulance service was great. I had great care [there]-‘
Seven of the 12 hospital journeys included a positive experience in the domain of effective treatment from trusted professionals. Participants described confidence in the medical and nursing care provided, and most conveyed a sense that staff discharged their duty not only with effectiveness, but also with genuine care and concern. Florian praised the clinicians who cared for him: ‘It went well throughout, from the triage to my eventual admission to the ward. I can’t really fault it. The staff were cautious and professional; the treatment was good.’ These sentiments were reiterated by his wife, Hilde.
The humour of the nursing staff was also mentioned on more than one occasion. As Jeff recalled: ‘The nurses were lovely-they made jokes and did their jobs well.’
There were repeated examples of positive experiences in the domain of involvement of and support for family members and carers. Participants described staff attitudes to relatives as caring, reassuring, helpful and supportive. George had such an experience: ‘People in this ward are very caring, maybe because it is a cancer ward-the nurses allowed my wife to stay overnight with me when it got bad.’
Hilde related her experience when she first found out about her husband Florian’s admission: ‘Of course, I was very scared and nervos-I spoke to the ward clerk and she said everything was okay and he was being taken care of in the emergency department-then later I got a call from the hospital. They said he’s now on the ward and everything is okay-‘
There were recurring themes in the negative experiences that present great scope for improvement. Seven of the 12 journeys identified a lack of clear, comprehensible information. Bruce, who was a casual worker, found that the lack of information and inadequate referral processes had a significant financial impact on him: ‘An overall lack of information about things during my hospital stay made me increasingly anxious-It wasn’t until I was about to go home that I was told I couldn’t work for six weeks.’ Bruce did not mention being referred to a social worker, but was referred to a psychologist to deal with his anxiety.
Although patients usually had their condition or any necessary procedures explained to them, there were several reports of conflicting information that left them confused. Kylie explained: ‘It was frustrating to be on and off the theatre list and I was in tears, not knowing what was going on. One of the registrars asked me if I wanted to go to the private hospital and said he would be back in five minutes to hear my decision! This was confusing-‘
For people who stayed in hospital for a relatively long time, relaying information about their progress has particular importance. Zena had been in hospital for over three months after abdominal surgery with unforeseen complications. She felt abandoned because of a lack of communication about her progress: ‘Some days I feel like nobody listens to me anymore because I have been here so long. It’s like they have heard it all before. I just ask the same questions because I want to know if I am improving and if I am any nearer to going home.’
Fiona found that the formal doctor’s rounds were a difficult format in which to receive information about her husband, Jeff. She explained: ‘The cardiologist would get side-tracked when doing his rounds as he had so many interns with him. He would be talking to us, then a junior doctor would ask him a question and he would get distracted.’
Although patient education in the traditional sense was provided, patient stories that described lack of information revealed there was little sense of partnership between patients and clinicians. Staff did not always engage patients with information, and so they were excluded from subsequent care planning. This led to their experiencing anxiety and distress.
Lack of communication was also the precursor to problems regarding lack of coordination and continuity of care. In Jeff’s case: ‘I was originally going to be discharged on Tuesday, then it didn’t happen until Wednesday at about 6pm. They didn’t explain why. They said if I had a stress test at 10am, I could go home the same day. I got my discharge letter at 6pm, but I didn’t get the result of the test. So my wife and I were waiting around all day. That was more stressful than the stress test!’
Three journeys detailed a lack of consultation between medical teams. Participants felt this inhibited their access to information and the teams’ understanding of their progress. Kylie said: ‘I felt as if some of the doctors were pressuring me and telling me different things-I was concerned about the miscommunication that occurred within the team.’
The other significant issue in this category related to delays or cancellations of investigations and procedures that were described by nearly half the patient participants. This was certainly the experience for Bruce: ‘-I kept having tests delayed. One test was put off three times. Some tests came as a surprise-‘
In five journeys there was a lack of attention to physical and environmental needs. This included three patients, who mentioned the unappetising quality and lack of variety of meals. Meals were important to patients as they were seen as ‘something to look forward to’. Additionally, people seemed more sensitive to food issues when they had a longer stay. Jan explained: ‘You get up early and then the only thing to look forward to is morning tea. But the food’s not so good in hospital, so even that’s not much to look forward to.’
A lack of sensitivity to personal needs was evident in these experiences. Zena commented: ‘Sometimes if I am using a bedpan, staff just walk into the room. This has happened many times even though I have asked for it not to.’ Jan also experienced a lack of awareness about her individual needs: ‘There are not enough nurses to help. I even have trouble with opening bags, because of my tremor, but I only seem to get help from the staff when I ask.’
Three participants raised the problem of sleep disturbance due to clinical care given at night. Jack recounted: ‘Often during the night when I have just gotten to sleep they would wake me up for an injection or something.’ These examples demonstrate a lack of congruence between patients’ personal needs and practitioners’ focus on completing tasks.
The findings reassured staff that, on the whole, patients noted effective clinical care, timely emergency treatment processes and caring approaches to relatives. The frequency of delayed or cancelled tests and procedures in such a small sample was, however, disturbing. This is not only of concern because of the stress it caused patients and relatives, but also because of the likely impact on length of stay. Although it is possible these issues arise from inadequate resources, it is more often an inability to understand and deal with a variation in demand for services that results in such problems (Walley et al, 2006). This demonstrates the need to explore and use available tools to manage existing capacity plans, to measure and map variation in demand for services and to plan for emergency surges in demand (Carey, 2002).
Every patient discussed the issue of clear, comprehensible information, whether in negative or positive contexts, suggesting its importance as a feature of care and a measure of quality for hospital patients and their families. What became clear was that it was not merely an issue about receiving information that was clear and comprehensible, but also information that was personally meaningful and congruent. While people were usually informed about the nature of an illness or clinical procedure, what they often wanted was more assurance that was personally relevant. For example: Bruce really needed to have meaningful information that could help him negotiate admission and recovery from heart attack, as a casual worker with financial pressures; Kylie wanted communication that provided assurance that everyone in the team was working together.
Two of the patient participants were nurses, however, their understanding of the hospital system did not equip them to negotiate the difficult inpatient pathways or the complex information channels. Where these examples of a lack of meaningful information arise, they appear to stem from health professionals’ lack of vision of patients as partners in care.
The data highlighted a mismatch in patients’ and carers’ concerns compared with those of health professionals. These findings, which were complemented by quantitative data on issues such as service waiting times, influenced the Statewide Cardiology Project’s implementation at the Concord Repatriation General Hospital. This allowed us to commit resources to the solutions that had the greatest impact on the people using the services.
Priority and focus changed from expensive solutions, including seven-day outpatient stress testing and a cardiac assessment nurse in the emergency department, to improving access to inpatient stress testing and planning for an outpatient chest-pain clinic. Giving feedback to staff about the important issues in patients’ experiences is also a valuable teaching tool.
There are some limitations to this study. Only one participant discussed the issue of a smooth transition to self-care. As half the hospital journeys were explored through inpatient interviews, many participants would not yet have experienced such problems. This will be addressed in future data collection by either a follow-up phone call after discharge, or by delaying the whole interview until after discharge.
Another limitation is the inclusion of only five carers. It is recognised that older carers and those with long-term conditions are particularly important in such research. We will seek greater representation from carers in future samples.
The Picker criteria were used as the framework to collect and analyse data. The Picker instrument is not intended to be a rigorous, qualitative research methodology - rather, it serves as a tested and accessible quality tool. While using the Picker criteria is one approach to making the analytical process quicker to implement, there are some constraints. For example, there are often positive and negative stories within one category, making it hard to label the dimension in a way that fairly represents the patient’s perceptions.
The reductionist approach can also remove the story from its context, making it difficult to move on to problem-solving for quality and clinical redesign. This could be solved through the use of more rigorous methodological approaches such as ethnography or phenomenology. However, these are unsustainable as a routine approach to quality improvement. Simply listing the common themes within the stories to create locally relevant domains may be a more expedient alternative for quality evaluation. In future, interviews will be audiotaped to increase the accuracy of data collection and to reduce staff resources needed for quality monitoring.
This study suggests there are common domains within patient experience, and this has motivated us to continue using patient stories for quality improvement. It is vital, however, not to stop the process at the diagnostic phase. Our institution and other clinical redesign units in NSW are exploring the possibility of a pilot project on clinical co-design. This process would occur through round-table planning sessions with patients, carers and clinicians to find solutions to patient-identified problems. It is possible to move patients from being passive recipients of care to active participants in clinical improvement and innovation (Bates and Robert, 2006; Joint Commission International Center for Patient Safety, 2005; Ruland, 2005).
Our hospital has also used patient and carer experiences as the inspiration for a research skills development project for senior clinical nurses. This aims to foster development of a nursing research culture. It involves 23 clinical nurse consultants and nurse practitioners receiving structured research training and acting as associate investigators in a phenomenological study into patient and carer experience in their clinical areas.
This study has confirmed the use of patient stories as a rich source of data for quality improvement and planning. The use of patient interviews has great scope for all clinicians with a genuine desire to reflect on their patients’ journeys through the hospital system. It is a concept aligned with reflective practice (Johns and Freshwater, 2005) and practice development initiatives in nursing (McCormack et al, 2004). By taking such an approach to quality evaluation in general, we not only incorporate patients’ and relatives’ perspectives, but can also target issues needing further investigation through quantitative methods such as clinical audits. We have a responsibility to seek perspectives and solutions from a range of stakeholders if we are to foster environments and systems of care that are meaningful for patients and families.
Implications for practice
Nursing, medical and allied health professionals need to make patient and family-led conversation part of their daily practice. Where practitioners obtain information through narrow questioning about physical symptoms and progress, they exclude those personal concerns that impact on the individual’s experience of hospital care. Broad questions that establish their expectations of therapy and explore the needs of the person rather than just the patient will elicit information to guide meaningful patient management. In addition, patients and families - the consumers of our service - should be included in a model of collaborative co-design to achieve relevant, patient-centred solutions that reflect a partnership in process planning.
We would like to thank Karen James, principal project officer, NSW Health; Dr Deb Lloyd, lecturer, health behaviour sciences, University of Newcastle; Breda Doyle, quality manager; Deanne Turner, executive project officer; Klaus Engelhardt, project team leader; Sue Schasser, clinical nurse consultant, aged care services emergency (ASET) team; all at Concord Repatriation General Hospital; Betsy Graham, area clinical redesign, Sydney South West Area Health Service; M. Colleen Stainton, professor, women’s health nursing, University of Sydney.
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