Q Exchange
Remote holistic support for primary and secondary brain cancer patients
- Proposal
- 2020
Meet the team
Also:
- Michael Kosmin - Consultant Clinical Oncologist, National Hospital for Neurology and Neurosurgery
- Hani Marcus - Consultant Neurosurgeon, National Hospital for Neurology and Neurosurgery
- Andrew Gvozdanovic - Neurosurgical Trainee, National Hospital for Neurology and Neurosurgery
- Georgina Kirby - Data Scientist and CTO at Vinehealth
- Vinehealth Expert Patient Advisory Board
What is the positive change that has emerged through new collaborations or partnerships during Covid-19 that your project is going to embed?
We collaborated with Royal Marsden NHS Foundation Trust to undertake a mixed-methods longitudinal study evaluating the platform’s impact on patient wellbeing, health-related quality of life, PROMS data collection and self-management in cancer patients during COVID-19, at a time of higher anxiety and reduced face-to-face time. 49 patients receiving SACT were recruited across all tumour types from Royal Marsden.
Results:
- 97% patient engagement
- 100% digital completion of EQ5D
- Positive trends in QoL
- Extensive learning and positive qualitative feedback from independent patient semi-structured interviews
Findings suggest the app can support self-management in patients not already employing self-management strategies. We demonstrated that the app is an attractive tool and source of information for patients.
Having evaluated the app across all cancer types, we now plan to specifically tailor it to brain cancer to be able to embed at NHNN.
What does your project aim to achieve?
Unfortunately, brain cancer patients have a high degree of unmet needs, largely due to the complex and multimodal requirements of their care. These needs are exacerbated by COVID due to higher anxiety and less face-to-face time with care teams. The Vinehealth app will work alongside current care pathways at NHNN to enhance the patient experience by empowering patients to actively engage in their care; by capturing highly relevant data points (symptoms, side effects of their treatment, and medication adherence) and through machine learning driven educational content provision.
Through this, people living with brain cancer can better self-manage from home and make more informed decisions about their care.
This project aims to investigate whether use of the VineHealth application can:
- Improve the patient experience of their care pathway by providing remote, personalised support
- Remotely collect PROMS data in a patient-friendly, convenient manner to enable better understanding of patient needs during COVID
How will the project be delivered?
The project will be delivered in phases according to the IDEAL framework for surgical innovation at the National Hospital for Neurology and Neurosurgery (NHNN).
Phase 1 will deliver the VineHealth application to 6 patients for a focused 1-2 week proof of concept study to evaluate the outcomes and study parameters planned for use in future studies. This will also aim to generate areas of improvement for both application integration into the cancer pathway, usability and function of application, and research planning.
Phase 2a will include 30 patients. This will be a single armed, prospective feasibility study aimed at evaluating in more depth, the holistic impact of the VineHealth application on the biopsychosocial aspects of patient health. We will also use this phase to begin assessing impact as a clinical decision support tool. We will undertake concurrent fine-tuning of the app to adapt to patient needs throughout.
How is your project going to share learning?
Key learnings:
- Effects of providing remote supported self-management to patients, to better cater to their needs during COVID
- Benefits of better self-management in reducing burden on stretched cancer services during COVID and remotely gathering patient-reported (PROMS) data to better understand patient needs
- How this data can be integrated into clinical services to support triage, inform telemedicine and enable more effective outpatient care
We will also produce a report evaluating how better patient self-management & tracking of key PROMS can better inform new models of care. 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
1 Nov 2020 | Project planning meeting with all stakeholders |
---|---|
15 Dec 2020 | Project defining meeting with all stakeholders |
17 Jan 2021 | Final project planning meeting with all stakeholders |
1 Mar 2021 | Rolling patient recruitment 1/3/20-1/6/20 |
15 Apr 2021 | Half-way point patient focus group: qualitative feedback |
15 Apr 2021 | Quantitative engagement metrics from app reviewed |
21 Apr 2021 | Half-way consultations: qualitative feedback from clinicians |
21 Apr 2021 | Webinar for Q community to update with progress |
1 May 2021 | Plan for report writing agreed |
31 May 2021 | Project group meet - ongoing review and adaptation |
7 Jun 2021 | Final formal patient focus group completed |
7 Jun 2021 | Full data analysis completed |
7 Jun 2021 | Project Report writing begins |
30 Jun 2021 | Results evaluation and report writing plan review |
5 Jul 2021 | Project group meeting to review data analysis findings |
15 Aug 2021 | Report completed and distributed |
1 Sep 2021 | Focus on dissemination (publication, Q webinar) - 1/9/21-1/3/22 |
Comments
Rayna Patel 19 Oct 2020
Thank Amer - great to hear. Please do get in touch if you'd like to discuss in more detail; we'd love to have your input
Hayley Pedrick 19 Oct 2020
A much needed enterprise! Brain health is such an important focus because if you are engaging in dietary, exercise and self care practices to support the brain, the whole body benefits! A holistic approach which provides support through the isolation and uncertainty of the pandemic would add huge value to every patient on your program. I wish you all the best in raiding the funds you need.
Peter Fish 17 Oct 2020
Looks like a very valuable project - patients will definitely benefit from the support the Vinehealth app can bring. Encouraging active self-management and proving accessible, and clinically sound, information when its needed most will undoubtedly lead to improved patient journeys. Looking forward to seeing the results.
Rayna Patel 19 Oct 2020
Thanks very much Pete - we'll be sure to share the reports with you, and look forward to hearing your feedback. All the best
Jean de Fougerolles 17 Oct 2020
Great project Rayna and thanks for sharing in this article. This work is crucial, especially given the current COVID pandemic that makes face to face care so difficult. The use of cutting edge technology that allows patients to track and share symptoms with their doctors and carers should accelerate positive outcomes for them and future patients. Thank You
Manish Patel 17 Oct 2020
Great initiative supporting an actual clinical lead - one of many that is underserved in the current circumstances. Well done Rayna & team!
Spencer D 16 Oct 2020
Great initiative here, it can't be emphasised enough how much of an impact the side effects from treatments can effect wellbeing during treatment. Excited to see how combining behavioural science with AI can enhance patient wellbeing. This shouldn't be limited to brain cancers. I'll be eagerly awaiting the results of this project.
Rayna Patel 19 Oct 2020
Thanks very much, Spencer - look forward to sharing and hopefully discussing the results if we are successful!
Kieran Hill 16 Oct 2020
This is a fantastic project, Rayna. Keep up the amazing work you and the Vine Health team are doing. Patients are extremely vulnerable during lockdown and projects like this are much needed for morale and support.
Clare Smith 16 Oct 2020
This is a wonderful use of technology giving patients more control of their situation when they are most vulnerable, I applaud you.
Charlotte Williams 16 Oct 2020
This has so much potential to support patients. I wonder if there is an interactive element that might add value? Being able to message etc. Also many years ago I was involved with some interesting research on brain cancer patient experience - might be helpful in some way: https://bmjopen.bmj.com/content/bmjopen/4/10/e005550.full.pdf
Good luck!
Rayna Patel 19 Oct 2020
Thanks Charlotte - really useful context. The interactive element is now in the app in basic form with further development in progress. Look forward to discussing further!
AL 16 Oct 2020
It's so important to give patients the ability to self-manage - and this is all the more important during the COVID-19 pandemic. Brilliant initiative - best of luck with it!
Regina Hartman 16 Oct 2020
With a background in both healthcare technology and behavioral economics, I have been closely following, and honestly fascinated by, the incredible work being done by the VineHealth team. A personal friend of mine has used their platform to help manage her care and she’s confided in me that she has never felt more informed and empowered thanks to the insights she’s gained throughout the process. I can only imagine that this partnership would allow many more patients to be in this same position. Onward and upward, Regina
Georgina Kirby-Blair 16 Oct 2020
As a data scientist I think it's so important that data driven technologies like this are adopted in the secondary care setting, particularly during COVID-19. It's absolutely essential that patients receive the best care possible and that we start to understand more about what they're experiencing at home through PROMs data.
Simon Blakey 16 Oct 2020
I'm really supportive of this project and even more so given the current COVID pandemic that makes the delivery of face-to-face care so challenging. Using modern technology to enable patients to feed back symptoms more accurately with the treatment team I'm sure have a strong positive impact on the treatment process as a whole
Michael Kosmin 16 Oct 2020
Patients with brain cancer often have complex needs that can be challenging for their care teams to meet, even in normal times. The limited face-to-face contact that is possible at present has made this even more difficult. This project has the potential to hand some control of their care back to patients, providing an effective communication channel to their team, along with remote, personalised support. I look forward to seeing how this project develops into a leading source of support for brain tumour patients alongside augmenting their relationships with their medical teams.
Jeremy Luzinda 16 Oct 2020
What an incredible project given the current tailwind of less direct face-to-face time with clinicians due to Covid - this technology is absolutely essential!
Please reach out to me if I can support in any way - I'm really excited about this.
Chris Smith 16 Oct 2020
My wife works as a doctor and I've seen the devastating impact Covid-19 has had both directly, but perhaps as importantly, indirectly through reducing face-to-face time with clinicians. Technology that can work to plug some of these gaps to improve the patient experience, allowing for better ongoing support is just brilliant. I fully support your project and do reach out to me if I can help in any way.
Joseph Thornton 16 Oct 2020
I love to see technology being used is such a fantastic way for patients. This is just what is needed today!
Patrick Olden 16 Oct 2020
A really important piece of the puzzle in helping cancer patients get in control of their care.
Anouj Patel 15 Oct 2020
This is an excellent initiative, using technology-led solutions to improve patient outcomes. Much needed generally, and more so now, at a time when COVID is exacerbating the suffering of brain cancer patients. Very much looking forward to the results, and I hope that this trend continues in other areas of healthcare.
Blaithin O Dea 15 Oct 2020
Keith Tsui 15 Oct 2020
Remote patient monitoring has huge potential to improve patients lives and the vine health platform is specifically designed for cancer patients. This project could really demonstrate the impact of the vine health app in supporting people with brain cancer, which is especially needed with the covid19 pandemic.
Adi 15 Oct 2020
I have seen first hand with a family member how devastating Brain cancer can be. Providing care truly becomes very difficult. Great initiative, and I wish you all the best!
Jyotika Patel 15 Oct 2020
This is a great way to use technology to support patients in this way.
Serdar Gemici 15 Oct 2020
As a co-founder of digital health startup, I truly appreciate what Vinehealth do. Digital assistance have become a complementary part of treatments. Especially, cancer patients need a professional self care and communication tool. I believe Vinehealth will create global impact on this area.
UW 15 Oct 2020
This is a great project especially in current times when cancer patients are more vulnerable and need more guidance and positivity. Some of the patients who must have felt isolated and terrified cause of the pandemic will need this kind of support in their fight against this disease.
Amer Hasan 15 Oct 2020
Great initiative to leverage app technology to help improve self-care in these challenging times
Nicolas O 15 Oct 2020
I have seen multiple people going through cancers, and I have witnessed first hand the difficulty of offering a tailored holistic approach to their care.
I imagine that the current COVID situation, with the loneliness and the focus on deaths, add to the anxiety of cancer patients.
Brain cancer is one of the most stressful diagnose, as the brain is so close to the feeling of identity.
The proposal, from a company with an excellent track record of delivering good research and building a product that people actually want to use, is well specified, with more than adequate planning and precise steps to deliver. I am particularly impressed bynthe focus on actionable data.
Because of economy of scale, the potential pay off for a successful app is huge.
I can not wait to see the results of this research and the positive impact on the lives of cancer patients.
Rayna Patel 15 Oct 2020
This is really kind of you to say, Nicholas. If you ever want to take a closer look at the platform and give any feedback or suggestions on how we could improve it based on your experience we'd love to hear from you. Thanks very much indeed, Rayna
Hani Marcus 15 Oct 2020
Brain cancer is a devastating disease for patients and their families. This project has the potential to really improve the care of our patients with brain cancer by empowering them to take control of their own health, and providing their clinical team with more information to guide decisions on treatment options.
Rayna Patel 15 Oct 2020
Thanks for your comments Hani and looking forward to working more closely with you and your team at NHNN if we are successful in this application. I'm particularly looking forward to understanding from you and your colleagues how this kind of PROMS data can be used most effectively to support clinical decision-making and service design.
Anastasiia Kucherenko 15 Oct 2020
As a user researcher who regularly speaks with cancer patients, I definitely see an importance to allow patients to self-manage and remotely communicate their symptoms, needs, and well being to their care team.
Rayna Patel 15 Oct 2020
Great to hear Anastasiia - user research is definitely the most important part of what we do to build something that people with cancer actually want and will use day-to-day
Jamie Smith 15 Oct 2020
I speak to oncology patients on a regular basis as a community manager for Vinehealth. It is clear how much of a positive impact the Vinehealth app is having on patients quality of life & wellbeing. It is especially crucial now during the pandemic when many patients are shielding and are having to manage their own care, with limited access to their care team. The app is a vital tool to help support people living with cancer and is remarkable from my perspective - I wish it had been available when close family members of my own had been living with cancer.
Rayna Patel 15 Oct 2020
Thanks so much for sharing your experiences, Jamie - very much appreciated. Always looking for more feedback from patients so that we can improve the platform, especially at this time of uncertainty
Emma Adams 13 Oct 2020
Hi. Great to see your idea. I'm working for the Health Foundation to identify opportunities for collaboration and support across Q Exchange. Your idea fits closely with some other ideas posted around using apps and remote technology. It might be worth having a look at these and seeing if you can give some support/get feedback from them. There are also special interest groups in Q around digital and primary care that you might want to contact for further feedback and to promote your idea. Good luck! Emma
Rayna Patel 15 Oct 2020
Thanks so much, Emma - I will reach out to the others for their feedback and input!
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