Meet the team
National Medical Director's Clinical Fellow
Care Quality Commission
- England - London (South)
Clinical Fellow Medical Oncology Guy’s Cancer Centre, Academic Clinical Fellow in GP Imperial College London, Visiting Lecturer at Guy's, King's and St Thomas' School of Medicine
Guy’s Cancer Centre, Imperial College, King's College London GKT School of Medical Education
- England - London (South)
- Georgina Kirby (Data Scientist)
- Jack Hilton (Health Strategist)
What is the challenge your project is going to address and how does it connect to your chosen theme?
Patient self-management is crucially important given the constraints on outpatient service delivery and the fact that health behaviours account for up to 50% of clinical outcomes. Better self-management is demonstrated to reduce burden on outpatient services.
Patients with colorectal cancer make vital daily decisions about their care, from adherence to chemotherapy to lifestyle choices on exercise, sleep and diet.
Despite this, patient find it prohibitively difficult to self-manage. Patients feel isolated and unsupported because NHS oncology services are unable to respond to the volume of need, information is inaccessible and symptoms are impossible to accurately track & understand. Poor patient self-management significantly worsens the patient experience and their outcomes (including poorer chemotherapy tolerance), & also increases burden placed on oncology outpatient services.
Our app supports patient self-management by allowing patients to easily track and understand their care.
What does your project aim to achieve?
Our app supports cancer patients to collect, track & visualise data about their care. We intelligently integrate this data on symptoms, side effects, medications and appointments with lifestyle data (exercise, sleep, diet and more) from smartphones and wearables. We know from preliminary studies that 94% patients use the app weekly. Better self-management reduces burden on outpatient & emergency services, with the dual benefit of gathering patient-reported data that can inform patient triage, support effective telemedicine appointments & enable faster response to urgent symptoms.
- Deliver app to 60 colorectal cancer patients over 3 months, in collaboration with NHS trusts (collecting qualitative & quantitative patient feedback to demonstrate improved patient experience/quality of life)
- Demonstrate downstream effect of better self-management on outpatient services through service engagement metrics and qualitative clinician feedback
How will the project be delivered?
We will be collaborating with NHS Trust partners to deliver the app to patients with colorectal cancer. We have a technical team in place to ensure ongoing GDPR compliance and safe handling of data. Patients will be identified through outpatient services. Patients will use the app to better track and understand their symptoms, receive information relevant to their condition, treatment and appointments and to better self-manage. Feedback will be collected throughout from both patients and clinicians. In addition to a series of patient and clinician focus groups and engagement events, we are engaging with the Q community to better understand the barriers to patient self-management and delivery of telemedicine services based on patient-reported data. Feedback will be fed into technical development to improve the app.
At the end of the 3-month period, qualitative and quantitative data will be used to conduct and economic and clinical evaluation or the effectiveness of the platform.
What and how is your project going to share learning throughout?
- Effects of providing supported self-management to patients, as an adjunct to traditional outpatient appointments
- Benefits of better self-management in reducing burden on outpatient care and generating patient-reported data, e.g. on symptoms, side-effects, medication-taking, exercise and activity, diet and mood
- How this data can be integrated into clinical services to support triage, inform telemedicine and enable more effective outpatient care; i.e. alternatives to traditional ways of conducting outpatient appointments
We will also produce a report evaluating how better patient self-management & tracking of key patient-reported metrics can better inform new models of care, such as outpatient telemedicine appointments. These learnings will be shared among our clinicians and organisational partners, as well as at key national cancer conferences, to our charity partners and at NHS stakeholder events. We will also make this available to the wider Q community.
How you can contribute
- Q members with an interest in supporting patient self-management
- Q members interested in using data to redesign services
- Q members with an interest in behavioural science
- Help from across the community in distributing the app in NHS Trusts across the UK
- NHS managers looking to collaborate on instigating the project in clinical settings
- Collaboration with expert patients to help develop our ideas and learn from the patient experience
- Oncology specialists from the multi-disciplinary team with experience in telemedicine to support the project (oncologists, CNSs, dieticians, physiotherapists)
|20 Jan 2019||Project group meet - ongoing review and adaptation|
|29 Jul 2019||Submit detailed proposal with idea refined based on feedback|
|20 Aug 2019||Q exchange shortlist announced|
|21 Oct 2019||Q exchange campaign if proposal is shortlisted|
|13 Nov 2019||Q exchange community event - funding awarded to winners|
|18 Dec 2019||Project planning meeting with all stakeholders|
|20 Dec 2019||Onboarding of patients identified through clinical provider|
|10 Jan 2020||Rolling recruitment 12/01 to 4/20 (5/month)|
|13 Mar 2020||Half-way point patient focus group: qualitative feedback|
|13 Mar 2020||Quantitative engagement metrics from app reviewed|
|14 Mar 2020||Webinar for Q community to update with progress|
|20 Mar 2020||Half-way consultations: qualitative feedback from clinicians|
|24 Apr 2020||Plan for report writing agreed|
|24 Apr 2020||Project group meet - ongoing review and adaptation|
|24 May 2020||Collating of qualitative and quantitative data to this point|
|24 May 2020||Project Report writing begins|
|26 May 2020||Final formal patient focus group completed|
|28 May 2020||Full data analysis: in-house team (Vine CTO and Strategist)|
|28 May 2020||Project group meet - ongoing improvement|
|28 May 2020||Results evaluation and report writing plan review|
|6 Jun 2020||Project group meeting to review data analysis findings|
|11 Jun 2020||Phase 2 of ‘findings report’ writing begins|
|24 Jun 2020||Report completed and distributed|
|27 Jun 2020||Webinar for Q community to update with findings|
|29 Jul 2020||Final consultations: qualitative feedback from clinicians|
4 Jun 2020
The project will provide a digital self-management platform (Vinehealth) to patients with colorectal cancer about to start chemo for 3 months. Around 20 active in UCLH on adjuvant Folfox/Capox will be recruited. The objective will be to assess change in quality of life, measured via validated questionnaires and app-collected wellbeing data. These metrics will be supported by descriptive data from patient and clinician interviews, testimonials and by app usage data.
What have we learned so far, either from the successes we have had or from where things haven’t gone to plan?
Due to the coronavirus pandemic, this study was put on hold. Prior to the pandemic, we were able to map out the study with the relevant clinicians at UCLH and build relevant functionality into the app to specifically cater to colorectal cancer patients. Fortunately, we do believe that even with the delays so far, we will be able to complete this study by the end of the year.
Following the study being put on hold, we have been able to take a number of measures to ensure maximal value to the project once it is able to go ahead. These measures have included the following:
- We have engaged >20 patients in extensive user research, including face-to-face user interviews with patients, longitudinal diary studies and usability testing with individual patients with the live and development versions of the app. This has enabled us to grow our understanding of app usage to better understand how and why people with cancer are using the platform and to understand where to refine its functionality to deliver better support
- We have conducted a quality improvement project to examine how the platform can specifically provide support to people with cancer who are currently under stringent self-isolation. This has been undertaken with the Royal Marsden NHS Foundation Trust and has shown the benefits of the psychological support available through the app in improving quality of life and wellbeing. This has significantly advanced our understanding of how the platform can support improved quality of life for cancer patients in current conditions and where in the clinical pathway we can most effectively deliver the app; these learnings will undoubtedly mean a greater chance of a successful outcome once recruitment for our Q exchange project is given the go-ahead
- We have developed the platform’s functionality to improve its ability to support quality of life for those undergoing systemic chemotherapy, including:
- Adding new supportive content and information
- Adding psychological exercises to support wellbeing
- Making the platform more intuitive and user-friendly, including for those who are less tech-savvy or sight-impaired.
- We have been able to spend additional time researching the most appropriate end-points to use within the study and validating these with patient representatives. We also recognised the need to be clear about how and what data would be collected at each milestone in the study to ensure we had sufficient data to complete a meaningful evaluation at the end of the project.
- We have been involved in discussions with UCLH’s Clinical Trials Unit to discuss how this project, if successful, might be taken forward into a longer-term, more robust study. This has been really important given the long timelines for funding and need to engage relevant stakeholders early.
What could others learn from our experience of working with a range of stakeholders and collaborating across boundaries (geographical, professional, sector) – what is working well and any challenges we have faced?
Key learnings so far that might translate to how others are working with a range of stakeholders include:
- Recognising the need for patient input, not just into the design of the support tool and methodology, but into the endpoints of the project and which were most relevant to their quality of life
- Thinking deeply about where in a clinical pathway it is most useful to deliver a certain intervention; several of the points we discussed and tried had significant advantages and disadvantages that made it important to choose wisely
- Exploring with clinicians how best to implement change with minimal disruption to their usual working patterns; to create a sustainable route of delivery that clinicians will engage with in the longer term, should the project be successful.