Improving Cancer Services Through Patient Involvement

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Contents:

  • Background
  • Patient Involvement
  • Patient involvement
  • Clinical Advice for the Provision of Breast Cancer Services

    • Quality improvement interventions always need to be tailored to specific services i. Nonetheless, a co-design approach to service improvement at least offers the opportunity for motivated patients to reflect collectively and collaboratively with the staff directly providing their care and the translation of touchpoints into improvement priorities in the project presented here illustrates how specific priorities may vary in significant ways between tumour groups. These findings suggest that cancer patients may have generic concerns[ 27 ] at a high level of abstraction but co-design improvements need to be service specific—being more targeted and effective when they arise from shared priority setting between patients and staff.

    Anna Wagstaff

    Certainly staff participating in the co-design groups reported a greater sense of empowerment to make changes to their service. It is important to determine whether these changes are sustainable over time but it should be noted that some co-design working groups disbanded early. These often comprised multidisciplinary staff who had not previously worked together, suggesting the importance of establishing or facilitating teamworking as an integral part of the approach. The indirect benefits of the implementation of the EBCD approach in this centre are being evaluated in an ongoing spread and sustainability study.

    The configuration of cancer services leads to a focus on the differences between tumour-specific groups. Improving outcomes guidance[ 28 ] and the process of peer review encourage reflection within, rather than across, services[ 29 ]. Our findings suggest that breast and lung cancer patients identified generic touchpoints that translated into service-specific improvement priorities.

    Healthcare leaders and cancer-care practitioners should focus on generic touchpoints in order to then identify specific problems within local services, ensuring that the importance of the patient voice and close collaboration with staff is present throughout any improvement project.

    Background

    'Improving Cancer Services Through Patient Involvement' is a collaborative piece of work. Its four authors are from the University of Warwick. Download Citation on ResearchGate | On Sep 1, , Clara Mackay and others published Improving Cancer Services Through Patient Involvement.

    The approach described here seeks to equip users and providers to work together on service and quality improvement offering patients and carers a much stronger voice in initiatives that explicitly strive to improve their experiences. The authors have full control of all primary data and agree to allow the journal to review data if requested. This article is distributed under the terms of the Creative Commons Attribution License which permits any use, distribution, and reproduction in any medium, provided the original author s and the source are credited.

    Skip to main content Skip to sections. Advertisement Hide. Download PDF. Implementing patient-centred cancer care: using experience-based co-design to improve patient experience in breast and lung cancer services. Open Access. First Online: 29 April Purpose The aim of this paper was to briefly describe how the experience-based co-design EBCD approach was used to identify and implement improvements in the experiences of breast and lung cancer patients before 1 comparing the issues identified as shaping patient experiences in the different tumour groups and 2 exploring participants' reflections on the value and key characteristics of this approach to improving patient experiences.

    Methods Fieldwork involved 36 filmed narrative patient interviews, h of ethnographic observation, 63 staff interviews and a facilitated co-design change process involving patient and staff interviewees over a month period.

    Patient Involvement

    Results Patients from both tumour groups generally identified similar issues or 'touchpoints' that shaped their experience of care, although breast cancer patients identified a need for better information about side effects of treatment and end of treatment whereas lung cancer patients expressed a need for more information post-surgery. Conclusion EBCD positions patients as active partners with staff in quality improvement. Introduction Policy-makers increasingly believe that encouraging patients to play a more active role in their healthcare could improve quality, efficiency and health outcomes[ 1 ].

    EBCD approach EBCD is a form of participatory action research[ 17 ] that seeks to capture and understand how people actually experience a process or service. Thirty six 23 breast, 13 lung patients were recruited through clinical nurse specialists CNSs who were asked to ensure inclusion of patients with a variety of backgrounds, socio-economic status, age groups and experience. Each patient was sent their own film to view before deciding whether it could be shared with other patients and staff. Two researchers VT and TW viewed the films independently to ensure analytical rigour and shared understanding of significant touchpoints.

    They analysed the films by identifying themes or touchpoints that shaped overall patient experiences. Films were then edited to produce one composite min film for each service, representing all the key touchpoints. In addition, audio recordings of the narrative interviews were transcribed verbatim and the data analysed thematically VT and JM for each tumour group.

    Open image in new window. Breast and lung cancer patients identified similar touchpoints at particular moments along the patient pathway. 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. Table 1 Breast co-design working groups and outcomes.

    Patient involvement

    Table 2 Lung co-design working groups and outcomes. 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. 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. Breast04 I would have really appreciated more time and personal contact with the clinical nurse specialist.

    Breast cancer patients felt that specialist cancer wards would have offered staff greater knowledge of their disease and psychological needs. 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. 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.

    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. 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.

    Breast05 The surgeon explained everything to me. 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. 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.

    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. 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.

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    It is the additional work that EBCD entails with regard to it also being an organisational development OD process Bate and Robert 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. Conflict of interest The authors declare that they have no competing interests.

    Disclosures None. Open Access This article is distributed under the terms of the Creative Commons Attribution License which permits any use, distribution, and reproduction in any medium, provided the original author s and the source are credited. Coulter A, Ellins J Effectiveness of strategies for informing, educating and involving patients. Institute of Medicine Crossing the quality chasm: a new health system for the 21st century.

    Shaller D Patient-centred care: what does it take? Picker Institute and the Commonwealth Fund. The Picker Institute Europe. Factors affecting the use of patient survey data in quality improvement. J Clin Nurs — Google Scholar. Bate P, Robert G Experience-based design: from redesigning the system around the patient to co-designing services with the patient. Goodrich J, Cornwell J Seeing the person in the patient.

    Working with patients to improve health care. Bate SP, Robert G Towards more user-centric organisational development: lessons from a case study of experience-based design. University of Technology, Sydney Google Scholar. Reason P, Bradbury H Ed. Participative inquiry and practice. Sage, London Google Scholar. Company Registration Number: Share Capital GBP Email Address: sales anybook. Iain Gooch. Orders usually ship within 1 business day. We use Royal Mail and other reputable couriers at greatly discounted postage rates.

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    Clinical Advice for the Provision of Breast Cancer Services

    Davis R, et al. Finally, a systematic literature review—using Pubmed as a research engine—was conducted to evaluate how clinical cancer care guidelines incorporate the identified PPVs. The Organizing for Quality framework was applied when analyzing the qualitative data according to the six common challenges [ 25 ]. Hannisdal E, et al. This third edition has been fully revised and updated, and incorporates all the recent changes in the National Health Service. We specify areas of key importance for next-of-kin involvement under each challenge to elaborate and specify content to the six challenges. According to the systematic review, in cases where the process of patient engagement in guideline development was explicitly described, micro level PPVs were represented more significantly.

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    How to partner with patients to improve health care