Collaborations

This is a cross-theme project between the Patient Involvement in Patient Safety and Workforce Engagement and Wellbeing themes

CLAHRC Yorkshire and Humber (Evidence Based Transformation with the NHS; Translating Knowledge into Action – TK2A)

Wales Interventions and Cancer Knowledge about Early Diagnosis (WICKED) programme

Why is this project important?

Diagnostic delay can occur at many points during the diagnostic process. When delay does occur, patients may face fewer treatment options and reduced survival and it also impacts NHS treatment costs. Recent research suggests that there may be missed opportunities to diagnose cancer earlier in the period when patients present to primary care with symptoms up to the point of referral (Abel et al, 2017; Swann et al, 2017). This may be particularly relevant for patients for whom a diagnosis is made more difficult by vague or atypical symptoms (Abel et al, 2017). Recent work (Nicholson et al, 2016) and healthcare policy suggest that involving patients in “safety-netting” could support the early detection of cancer and finding ways to do this is now a priority. With Research Capability Funding from Yorkshire & Humber Commissioning Support (YHCS) and National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC), we have spent three years assessing patient involvement at this point of care for diagnosing cancer in primary care, exploring the acceptability and feasibility of a safety-netting intervention in a primary care setting and co-producing a safety-netting intervention with patients and primary care staff.

What are we doing?

In the first phase of this work we conducted a systematic review of the literature (Heyhoe et al, 2018) to 1) identify interventions that involve patients in achieving an earlier cancer diagnosis in primary care and 2) establish key components for engaging patients in diagnosis after an initial presentation with potential cancer symptoms. We found no interventions involving patients in this way. Sixteen articles provided suggestions of components important for patient involvement and drawing from these, we developed a logic model which proposes a theory of change for interventions of this kind.

We then interviewed 15 primary care stakeholders including 10 healthcare professionals (GPs and Nurse Practitioners) and 5 patients with a diagnosis of cancer and held a dissemination workshop with 18 stakeholders to assess 1) the components considered important for patient involvement in diagnosing cancer earlier in primary care and 2) to explore the acceptability, feasibility, cost and burden of three potential interventions (a verbal discussion between the clinician and patient that includes a plan for follow-up; written information given to the patient which includes information about symptom monitoring and what to do next; a prompt being sent to the patient after the consultation asking them to review their symptoms and providing information about what to do next). We found that components important for engaging patients were 1) ‘keeping the door open’ (e.g. having specific timelines for representing back to primary care rather than an open-ended invitation), 2) ‘roles and responsibilities’ (e.g. both patient and clinician being part of a partnership in achieving a diagnosis), 3) ‘fear of cancer’ (e.g. fostering and supporting an open patient-clinician discussion that assists diagnosis and which a fear of cancer may hinder).

As well as interview findings, we also held a dissemination workshop with 18 stakeholders to assist with intervention concept. Stakeholders proposed that any intervention should include a verbal discussion and plan to follow-up and review symptoms and written information about what to do next should symptoms persist, become more severe or change. The use of a prompt should be further explored.

In the next phase we collaborated with design researchers in the TK2A team to co-design a novel safety-netting intervention with and for primary care stakeholders to promote the greater involvement of patients to support the timely diagnosis of cancer in primary care. Here, we facilitated 3 stakeholder workshops with patient representatives, GPs and Nurse Practitioners to produce the format and content of the intervention prototype and held 5 focus groups (2 with patients and 3 with primary care practices) to gain feedback and refine the prototype. During the co-design workshops, stakeholders agreed that the intervention should involve a visual form of communication; include key timelines, such as how long symptoms should be monitored and when the patient should come back; that it should be able to be delivered in less than a minute. Findings from patient and staff focus groups indicated that the intervention – Shared Safety Net Action Plan (SSNAP) would be acceptable and feasible in practice.

Our research tells us there is a need for this intervention and SSNAP is acceptable to both patients and staff. It encourages staff to discuss uncertainty about diagnosis, provides patients with a symptom review prompt at the end of their consultation and a plan for returning to primary care if necessary. The image below gives an overview of the SSNAP intervention (click on image to enlarge).

We have obtained funding from Vale of York Clinical Commissioning Group (CCG) to carry out some small-scale refinement testing of SSNAP in primary care practices (18 month project). Following this, we will seek to obtain further funding for a feasibility study to explore how SSNAP works in practice, and how it might be evaluated at scale to demonstrate an impact on the timely diagnosis of cancer and patient outcomes. We are also collaborating with the Wales Interventions and Cancer Knowledge about Early Diagnosis (WICKED) programme. This project aims to develop a behaviour change intervention to expedite diagnosis through primary care and contribute to improved cancer outcomes. The SSNAP intervention will be tested within the WICKED programme.

Patient and Public Involvement and Engagement

Patient and public involvement featured heavily in the development of the SSNAP intervention. In the early stages of the research we sought input from the Yorkshire Quality and Safety Research (YQSR) Group patient panel and from local cancer charities, and the co-design phase included patient representatives. Since the commencement of the Centre in 2017, the research has been supported by our Lay Leader. To support the small-scale refinement testing of SSNAP, we plan to set up a Patient and Public Involvement and Engagement forum.

Outputs and Impact                                                                                             

Contact for more information: Dr Jane Heyhoe