1. Discovery Interviews: Perceptions and experiences of people affected by colorectal cancer in Queensland
This research used Discovery Interviews to gain the consumers perspective of cancer care in the Southern area of Queensland. The project aims to test the value of the TMDiscovery Interview methodology as a means to understand the experience of patients and their carers using Queensland Health cancer services. Discovery Interviews provide opportunities for consumers (patients and their carers) to give an account of their illness in their own language, highlighting aspects that are relevant to them. Over 40 patients and carers with colorectal cancer were invited to participate and share the story of their experience with us. The patient stories have been video recorded as vignettes.
Vignettes have used actors to provide a visual story of key themes identified by consumers and their carers as their experience of cancer. Case study vignettes will be presented to clinical teams to explore and identify service improvement activities. This allows clinicians an innovative ‘look' at a personal cancer journey.The usefulness of this service evaluation information will be evaluated as to the likelihood of change and the level of perceived relevance to clinical teams and quality of data. Clinicians were provided the opportunity to provide feedback on what this vignette meant to them. This also took the form of a TMDiscovery Interview that was recorded, transcribed and de-identified.
The aim is to understand a “whole” journey captured by a number of people. It is the opportunity to hear detailed stories from a small number of patients and carers across the whole patient journey.
Great care has been taken to ensure that the Discovery Interviews are conducted well; both from the point of view of safeguarding patients and carers wellbeing and to obtain the rich information that will inform improvement. The NHS Modernisation Agencies “A guide to using discovery interviews to improve care” has been used to ensure that interviewers will be properly selected and trained and supported in practice according to these guidelines. Training of interviewees will occur with the assistance of personnel experienced in this methodology, and a training manual developed to ensure consistency for all future training.
1NHS Modernisation Agency (2003). Learning from patient and carer experience: A Guide to using Discovery Interviews to Improve Care.
2. Queensland Discovery Interview Collaborative Discovery Interviews: Consumer, Carer and Clinician perceptions and experiences of Queensland Health services Health Research Fellowship
This research aims to use Discovery Interviews to better understand patient and clinician experience of the health system; describe how the routine use of narratives (stories) can facilitate service planning, delivery and development of health services; and explore the utility of narratives as an organisational change tool.
Meaningful clinician and consumer engagement is an imperative for Queensland Health (Queensland Health, 2005). In order to sustain positive relationships with whom they engage; engagement must be considered a journey rather than a destination. The process of engagement is routine practice in organisations that effectively involve clinicians and consumers (HCQ, Information paper, 2009).
It is widely accepted that the participation of consumers, community [organisations] and clinicians is essential to the planning, implementation and evaluation of health policy, health service planning and health care delivery. However there is widespread opinion that consumer engagement is poorly understood, and inconsistently practiced (Gregory, J. 2008). Like many other health systems, Queensland Health in collaboration with Queensland Council of Social Services has developed several manuals and information papers to guide consumer and community engagement (Health Consumers Queensland: Information paper, 2009; Health Consumers Queensland: Agency Handbook, 2009).
These guides provide information and ideas for health agencies on how to invite, encourage and support consumer engagement. They emphasise that the consumer or patient is central to the Queensland health system. They also advocate that all interventions should be aimed at ensuring consumer or patient centred care and support, in an environment where quality, safety and effectiveness of service delivery is paramount. To date consumer engagement and user involvement in the planning and delivery of health services has been characterised by consumer advocates representing others, small focus groups and forums, seminars and surveys. While these mechanisms of engagement are valid, they have limitations. Firstly, there is little opportunity for the patient or carer to talk about how they experienced their illness and its impact on their lives. Secondly the data that these strategies provide to inform health service planning and service development is provider oriented. They most often seek additional information on what is already known by service providers and researchers with little real opportunity for the consumer to tell their whole story and emphasise what is important to them. These limitations are thought to be the result of our very narrow definitions of user involvement and the fact that in practice user involvement is still ultimately controlled by service providers (Bridges, J .et al 2008).
Discovery Interviews provide a new way to engage consumers and clinicians in the planning, management and delivery of health services. They allow us to explore the impact of illness on patients and carers everyday lives during each stage of their journey through the health care system and provide detailed descriptions of patient experiences of diagnosis and treatment (Bridges, Gray, Box & Machin, 2008; Bridges & Nicholson, 2008; NHS Improvement 2009). Research on the utility of Discovery Interviews evidences a number of benefits. The technique has been used effectively by clinical teams to identify and stimulate service improvement. For example, in response to carers feeling invisible and neglected, and patients feeling abandoned in the period between discharge from hospital to follow up a cardiac ‘drop in' clinic was developed and is now a regular weekly event (A guide to using Discovery Interviews to improve care, NHS Improvement, 2009).
Discovery interviews generate stories; stories have been shown to help health care providers better understand the experience of consumers by providing insight into their needs. The UK experience demonstrates that when stories are fed back to health care professionals they can motivate those in the caring role to change the way their services are delivered. Discovery interviews often challenge the assumptions of health care providers and in doing so can alter personal attitudes and/or behaviours. This in turn can lead to small changes to direct patient care, changes in policies (e.g. at the whole hospital level) and a stronger commitment to patient and carer involvement in service improvement (Bridges et al. 2008). The stories generated by Discovery Interviews act as a trigger for culture change and service improvement.
The imperative for meaningful engagement is not only relevant to consumers; clinician engagement is also a priority (Queensland Health, Health Systems Review, 2005). Similar to consumer engagement, clinician engagement strategies have focussed on surveys and their participation in working groups, networks and forums. To date clinicians have not been asked to share their experience of providing care in the current environment. Just as consumer stories enable clinicians to better respond to consumer needs; listening to clinician stories would enable the broader organisation to respond to the needs of clinicians. Used in this way discovery interviews could strengthen our existing clinician and consumer engagement strategies.
This research is a collaborative project between the Metro North Health Service District, Queensland Cancer Control Analysis Team (QCCAT), Metro North Sub Acute Care Services, Ashworth House, Central Districts Local Clinical Networks, Queensland Paediatric Haematology and Oncology Network and Queensland Health. The project is funded and sponsored by Queensland Health.
If you are interested in hearing more about this project please contact:
Health Research Fellowship
Queensland Cancer Control Analysis Team