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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

Comments

  1. 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

  2. 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)?

  3. Hi Christian I would be interested to see your finding with smart phone apps if you don't mind sharing. Thank you Isabel

  4. Guest

    Christian Subbe 7 months, 3 weeks ago

    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.

  5. 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

    1. 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.

  6. 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.

     

  7. 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

     

  8. 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

     

    1. 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!

  9. 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.

  10. Really love this idea, anything that give the patient control wins with me!

    1. Thanks Debbie, great to hear!

  11. 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!

  12. 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

     

    1. Thanks for this Joanne! Looks really helpful, will take a look

  13. 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

     

    1. 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

  14. Guest

    William Chaundy 10 months, 2 weeks ago

    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.

  15. Guest

    Patrick Olden 10 months, 2 weeks ago

    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.

  16. Guest

    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.

  17. 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

     

    1. 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.

    2. 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

    3. 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

  18. 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

  19. 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

  20. Hi,

    Which AHSN are you in. You might be able to get some advice on the behaviour and implementation part of your project.

    1. 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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