Q Exchange
Supporting colorectal cancer patient self-management
- Winning idea
- 2019
Meet the team
Also:
- 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.
Key aims:
- 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?
Key learnings:
- 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)
Plan timeline
| 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 |
Project updates
4 Jun 2020
Brief overview:
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.
Comments
Linda Mackintosh 18 Oct 2019
This is a great idea not only to lighten some burden from oncology outpatient appointments but to also empower the patient. Technology is key as we move forward and using this to help patients gain more information and help them understand what is happening to them and the journey they are on with this illness is a must.
Patient user feedback vital to development and success of this project
Charlie Sharp 17 Oct 2019
This is an interesting project.
Our experience of a self-management app in COPD has been challenging (as is reflected in a number of areas) due to uptake. We have a fairly elderly, rural population, and their engagement with technology (and willingness to engage) means that uptake has been minimal.
One thing likely to be of benefit is regular "touch points", which needn't be clinician contacts, to ensure that technology is working and understood, along with exploring whether the app has been used. Obviously resource needed for this.
Do you have any input from other areas which may have used apps (or locally the experience of respiratory teams using myCOPD)?
Isabel Ho 13 Oct 2019
Hi Christian I would be interested to see your finding with smart phone apps if you don't mind sharing. Thank you Isabel
Christian Subbe 12 Oct 2019
We have published a review of smart phone apps in cancer and just completed a study with a checklists for patients with cancer (50 patients, 50 relatives, 50 controls). The sample size for this project is small and the recruitment plan might just about come together but the small sample size might limit what can be extrapolated.
Happy to contribute if you feel that is helpful.
Claire Miller 11 Oct 2019
Hi Rayna and team. This is an exiting idea and it is always a delight to read about innovative approach to delivering high quality care. In my experience patient engagement at design stage and through out the change is crucial, particularly around culture and ability for patients to use and benefit from new ways of delivering care. I am currently working in health risk management and would be interested in how this is being covered. Best wishes for the future. Claire Miller
Rayna Patel 13 Oct 2019
Hi Claire - absolutely. We have spent the last 12 months designing and iterating the app based on feedback from patients. We have conducted extensive research and interviews with people with cancer and subsequently have given people early versions of the app to try our so that we can iterate further based on their feedback. It's incredibly important to us to make sure that nothing is designed without as much input as possible from patients.
Tim Benson 10 Oct 2019
I have been doing some research into apps for people with long term conditions. The outstanding finding is that people's satisfaction with the app, and the amount of effort they put in to using it, seems to be closely related to their initial confidence to use it. This is related to both digital confidence and health confidence (self-efficacy). Has this point been fully recognised? It seems that only between a fifth and a half of those who say they want to use an app really make it work for themselves (depending on what assumptions you make).
For digital confidence see https://informatics.bmj.com/content/26/1/e000018,
For health confidence see: https://bmjopenquality.bmj.com/content/8/2/e000411.
Sue Gallagher 10 Oct 2019
I do like your idea. Please don't forget the 6% who aren't using the APP regularly. Do they have tech expertise? Are they wary of it? They still need support. The whole self-management concept will be so new to some patients out there. So I guess there's lots of work ahead. Good luck!
Sue
Christine Morgan 9 Oct 2019
Hi Rayna
My initial response is similar to that of Ceinwen Giles as it appears to be an organisation focussed approach to reduce outpatient appointments and the 'burden' on staff? I've not read anywhere about the burden of managing conditions for the patient and how this relates to their lives and the functions that are important to them. Indeed many patients find that serious illness and ongoing conditions are life changing in how they function as people in work, social life and/or relationships with a similar knock on effect of finances - usually lack of.
From previous research and interventions I've seen the ones that stick and are really useful are ones that benefit the patient's lives which then has a knock on effect on services. This needs to take an approach to really understand what impact the illness has had on the person and how they are living their lives now.
I'm surprised that there appears to have been little partnership with patients and carers at the design stage? it looks like patients have been included, after the initial design, by the choice of professionals and then only used for feedback or focus groups?
The other issue is that how self-management is presented can make the difference between being useful and engaging for patients or making people feel that they need to get on with it on their own or they've failed. I personally like the term supported self-management which leaves the door open to ask for advice/help when needed.
I think a better balance needs to be struck of how patients could possible benefit and if the proposed App actually has functions which people will find useful in their lives and not just to service data collection for professionals.
Hope these are useful points and apologies if some of my comments/questions have been dealt in the detail not seen.
Regards
Christine Morgan
Rayna Patel 13 Oct 2019
Hi Christine - we couldn't agree more! We haven't detailed everything that has already been done in the word counts for the application but we have spent the last 12 months speaking to hundreds of people with cancer to ensure every aspect of the app benefits from their input and precisely fits their needs. Each feature has been specifically iterated on the basis of feedback from people with cancer. The app (which has already been designed) was primarily built to support self-management and empower patients and this is its focus. A downstream benefit of this is in supplementing outpatient services - we focussed on this element in the description above given the specific category of Q exchange we've entered which is "reducing the burden on outpatient services". Very happy to discuss if you'd like to know more!
Michaela Senek 4 Oct 2019
Hi
We are proposing something similiar with self-management for pregnant women with obesity. I would be very interested to know more about your experience,in particular with development of content etc.
Debbie Teale (nee Taylor) 2 Oct 2019
Really love this idea, anything that give the patient control wins with me!
Rayna Patel 7 Oct 2019
Thanks Debbie, great to hear!
Martha Martin 23 Jul 2019
I’m incredibly excited to be collaborating on this project. Having worked on an Acute Oncology Unit for the past 9 months, I have witnessed and discussed with patients the potential for them to be able to track, and when appropriate, self manage their symptoms using technology. It’s incredibly difficult to keep track of treatment side effects and distressing to feel alone without support. I truly see this project as providing people with a “cancer companion” which can complement the brilliant acute oncology services which exist in most hospitals. I also look forward to taking on board your helpful feedback - thank you!
Joanne Smithson 23 Jul 2019
Just come across this article and has some useful insight for your project.
Moon, Z., Moss-Morris, R., Hunter, M.S., Goodliffe, S. and Hughes, L.D., 2019. Acceptability and feasibility of a self-management intervention for women prescribed tamoxifen. Health Education Journal, p.0017896919853856.
Good luck!
Joanne
Jack 24 Jul 2019
Thanks for this Joanne! Looks really helpful, will take a look
Isabel Ho 22 Jul 2019
Hi @Ceineken, I agree and from our experience patients do want to know why providing these information is beneficial for them. This project has some overlap with our Q exchange idea https://q.health.org.uk/idea/2019/using-electronic-patient-reported-data-to-improve-oncology-services and would be good to hear your thought on if you don't mind.
Jack, how is this different from other apps e.g. patient like me in design and logistic of collecting such data?
Thanks,
Isabel
Jack 24 Jul 2019
Hey Isabel, thanks for this.
While platforms such as Patients Like Me provide basic symptom tracking and a network/community to engage with, these are generic across many diseases, meaning they lack specificity in the data collected. These platforms have no focus at all on patient self-management, which is the crux of this project Personalisation through machine learning allows each person to understand their symptoms and lifestyle at an individual level
Other platforms are not easy to use and fail to offer direct day-to-day patient value, resulting in poor engagement and incomplete data.
It would be great to speak soon and explain a bit more about what we're doing. Looking forward to getting something confirmed in the diary soon!
Thanks,
Jack
William Chaundy 20 Jul 2019
From my experience anything that allows patients to become more connected with their care ultimately results in more bespoke treatment with better patient outcomes - This is a great idea.
Patrick Olden 19 Jul 2019
Anything which will help in feeding back symptoms more accurately with the treatment team will have a strong positive impact on the treatment process as a whole.
Henry Goode 19 Jul 2019
This is a great idea, using wearables should mean it doesn’t become too taxing for patients to provide share an accurate view of how they are feeling throughout the treatment process.
Ceinwen Giles 17 Jul 2019
Hi Jack, thanks for inviting me to comment on this. It looks like a great initiative....a few thoughts:
- Your starting point for this project is reducing the burden on outpatient care - the way you've written it, it's not very clear to me what the benefits to patients will be. In fact, talking about reducing a burden on outpatient care might actually frighten patients who want to be able to see their outpatients teams if they need them.
- It would be useful if you could more clearly articulate what you think are the benefits to patients of self-management of their symptoms issues in this context (I know that self-management is widely supported but how does it relate specifically to what you're trying to achieve here? ).
- Finally, I wonder if there is a way through the app of encouraging patients to either be in touch with one another for peer support, or to link with relevant bowel cancer charities and their forums? And also link to their medical team or someone who might answer specific questions that they have? Self-management is a challenge but part of the issue is that I think it can become a code word for moving patients away from care which provides them advice and comfort, as well as allows them to manage things more effectively.
Really good luck with it! Happy to discuss more if that's useful.
Ceinwen
Jack 24 Jul 2019
Hey Ceinwin,
Thanks a lot for your comments, sorry it has taken a while to come back to you on them. Responses to your 3 points below:
- We completely agree that patients should be encouraged to seek outpatient support as needed. In terms of benefits for patients, evidence shows that patients are able to better self-manage and feel more in control of their care if they are able to track it easily. This has a positive impact on both quality of life and survival. Tracking enables patients to better understand trends in their symptoms, and may be able to identify the need to contact a clinician at an earlier stage in deterioration. This doesn’t mean that they aren’t contacting outpatient services; it simply means that they are empowered to contact them at a point at which simple interventions, such as titration of pain medications, are more likely to be effective. This has a downstream effect on overall outpatient burden.
We will prioritise storing and providing clear contact details for key points of contact for users of the app, and encourage them to communicate with their clinical team as appropriate.
- Research evidence shows that tracking of patient-reported outcomes can increase survival in metastatic cancer patients by up to 20%. Effective tracking increases quality of life and improves the patient experience/patient satisfaction (Young-Afat et al. (2016) Patients’ and Health Care Providers’ Opinions on a Supportive Health App During Breast Cancer Treatment: A Qualitative Evaluation. JMIR Cancer vol. 2; 1). Tracking also supports patients to present to the most appropriate routes of care, at the right time. Empowering patients to self-manage not only improves outcomes, but reduces the clinician input needed, for example by reducing chemotherapy-related toxicity (Basch E et al. (2017) Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA. June 4, 2017).
- This is definitely something we are looking to build into the app. We are planning to create a peer support community, with trusted and accurate information to support peer-to-peer conversations. We have built in methods for patients to keep track of their key contacts for support and information. We absolutely agree that self-management should not be a code for moving people away from care; however, we do know that empowering patients to better self-manage improves their experience of treatment and improves outcomes.
The priority is about empowering them to understand even more about what the treatment they’re going through and feel confident and in control of their care.
It would be great to hear any further thoughts you might have, and feel free to reach out directly with a message, happy to have a call at some point.
Jack 19 Jul 2019
Hi Anna,
Thanks for this, I certainly agree that a design group would be really useful. We're trying to engage with as many patients as possible to test the app with and learn from their experiences.
From your experience in setting up a design/reference group, how did this begin? Did the patients come from a certain trust/hospital, or did you hold remote sessions to gain feedback? I think getting this patient/product development feedback loop is really important to get right to make sure we're providing the best product.
Thanks!
Jack
Anna Burhouse 18 Jul 2019
Hi team,
I certainly agree that working out how to include a peer support angle is a good idea.
I wonder if you should invite patients to form a design group and then ongoing reference group to help you focus the app on what matters most? Often it’s lifestyle and logistics as much as treatment. I remember talking to several colorectal cancer survivors in rural areas and hearing that NHS transport to and from treatment was really difficult, especially if it was a long journey with no available toilet stops. Many spoke of how shameful and embarrassed it made them feel. I suspect that thinking about behavioural and emotional support would be a good fit, which is where peer support may well help with normalisation, acceptance, resilience and practical coping strategies.
Good Luck
best wishes
Anna
Suzanne Horobin 11 Jul 2019
I am at the East Midlands AHSN. We hold monthly innovation surgeries at which our Innovation and Commercial team are available to give guidance and advice. If this would be of value to you, please visit our website to complete the enquiry form and apply for a session
https://www.emahsn.org.uk/our-work/industry-and-enterprise/contact-our-industry-team
Beccy Vallance 9 Jul 2019
I am afraid I don't know a contact but there is an email address, maybe they can direct it to an appropriate person? info@yhahsn.com
Tony Jamieson 5 Jul 2019
Hi,
Which AHSN are you in. You might be able to get some advice on the behaviour and implementation part of your project.
Rayna Patel 8 Jul 2019
Hi Tony,
We're working with a number of AHSNs across the country. We would love to discuss with Yorkshire and Humber - who would you recommend speaking to?
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