The pandemic posed many challenges to cancer services at Gateshead Health NHS Foundation Trust (GHFT) and the suspension of these support structures exacerbated the feelings of loneliness and isolation for those experiencing cancer. It was during this time that I was seconded to the role of Macmillan Personalised Care Project Lead, and recognised that we had an unparalleled opportunity to innovate and use digital technology to ‘keep patients connected’, extending our cancer support offering via an online platform.
The aim was to improve access to health and wellbeing services during the pandemic, to ensure that patients had appropriate and timely support. The objective was to create an accessible digital programme of initiatives to offer people affected by cancer a menu of personalised support.
To maximise digital inclusion, we applied for a grant and were awarded sufficient funds to support an IT helpline. This allowed us, in collaboration with patients, clinicians, cancer clinical nurse specialists (CCNSs) and local charitable bodies, to develop a range of videos, podcasts and virtual patient workshops.
Everything digital
Videos/podcasts are a simple, low-cost solution, but one that can have a powerful impact on patient care. We understood that the success of the project would depend on the staff involved. The CCNSs within the Trust were keen to share insights about patients' needs that the podcasts would need to address, and we continued to meet virtually on Microsoft Teams to shape the podcast agenda.
It was during these forums that we generated ideas about what the podcasts should cover and which aspects of patient care to include. For example, during the pandemic, many wig shops in the area had closed, along with the services they offered, and there was an increase in patients requesting a ‘cold cap’ to retain their hair during chemotherapy. We saw a rise in telephone queries relating to hair loss and available services such as the cold cap, which inspired us to produce our own video to help patients understand the concept of the cold cap. In the video we addressed patients' concerns and one of our patients contributed by describing how it felt to use this equipment, helping to personalise the experience and increase engagement.
The videos and podcasts have covered a range of topics related to a patient's cancer journey, which can be accessed by patients from their devices at a time that suits them.
Alongside recording the podcasts, and with the support of the CCNS team, we devised a series of virtual cancer clinic workshops. As part of these sessions, we have invited ‘expert patients’ to provide peer support and help us formulate the agendas for each workshop.
These sessions have provided much-needed support by allowing cancer patients and carers to meet face to face virtually (with no need to wear masks) in a supportive, safe environment, which facilitates open discussion and the sharing of personal experiences of living with and beyond cancer. Patient feedback is elicited following the sessions, helping us to tailor our content and delivery to meet people's needs and ensure that service transformation is patient driven.
Partnership working
We have worked closely with an established local charity, Northern Cancer Voices, on the project. The charity, which is a collaborative group of patients and volunteers, has helped shape and disseminate our digital portfolio via social media. We, in turn, have helped raise the charity's profile by inviting its chair along to record a podcast.
Patient engagement has been essential to this service design, especially in the context of digital exclusion. We continuously ask each patient to evaluate the workshops and podcasts in order to ensure that these have addressed ‘what they wanted’. Patients have been actively encouraged to participate in the podcasts.
As a qualified cancer rehabilitation practitioner/personal trainer/exercise referrer, I was a good fit for the role of Lead Lifestyle Coach in the North of England for the Diet and Activity After Breast Cancer Trial (NEWDAY) 2021. This has enabled me to use elements of the programme to shape the virtual online support group clinics, focusing on cancer treatments, physical and psychological wellbeing and management of long-term side effects. The sessions have facilitated open discussion and enabled personal experiences of living with and beyond cancer during the pandemic to be shared.
I have interviewed over 40 health professionals, patients and charities, which has enabled me to compile trusted and reliable sources of cancer-related information.
‘The interactive digital portfolio has the potential to not only significantly enhance the patient experience and improve outcomes, but also reduce pressure on overprescribed services’
The podcasts continue to grow in number and popularity – to date, there have been 2750+ views). They can be found on Spotify, as well as on the Trust's YouTube channel. There are now podcasts covering surgery, chemotherapy, palliative care, menopause, finance, sexuality, prehab, clinical trials and side-effects relating to treatments.
Evaluation of the workshop sessions has been very positive. Patients have found them to be a safe forum for exchanging perspectives and sharing concerns; they have enabled them to feel empowered and gain confidence to press ahead with their treatments. (Patients declining the offer to join a virtual workshops are offered the option of a paper-format telephone consultation or a face-to-face consultation.)
The specialist breast care nurses have been instrumental in supporting the sessions and driving forward the referrals. This has been an important factor in ensuring buy-in from the surrounding team to the changes being implemented.
Significant improvements
We are now 2 years into the project. Both the number of listeners and numbers attending the virtual workshops have increased significantly since the start. Our data demonstrate that 99% of patients engaging with the digital platform feel better prepared and less anxious about their impending treatments. (It is important to reiterate that all digital information is available in paper format for patients wishing to have alternative access to the information.)
Since 2021, we have delivered 52 virtual workshop sessions. We have also made 822 referrals, with these patients having an average age of 56 years. Feedback from those attending the virtual workshops has shown that:
- Prior to taking part, 92% of patients had received no counselling about lifestyle
- 92% planned to make lifestyle changes by improving their diet and increasing physical activity
- 98% felt better prepared for adjuvant therapies and would recommend the session to other patients
- 88% found it easy to access the link
- 83% would want future sessions to be delivered virtually
- 80% found the group sessions were helpful for the management of their symptoms.
The patient testimonials show that attending a virtual workshop was the first opportunity they had been given to talk to other cancer patients, and they found it reassuring to talk to others in a safe and supportive forum.
The CCNS workforce has found that the interactive workshops and the availability of digital information has improved the patient experience. It has positively impacted clinic capacity because patients are receiving substantial information through the workshops, leaving CCNSs with more time for patients with complex needs.
Before COVID-19, we had hired a hotel to deliver health and wellbeing sessions, which was costly and restrictive in terms of the numbers we could invite. The success of the programme and platform has been recognised by stakeholders across the integrated care system and will be extended locally to patients affected by cancer beyond the confines of our Trust. Our success has been recognised throughout the region as the gold standard for patient cancer care. The Northern Cancer Alliance is currently using a poster designated specifically to signpost patients to the services.
An advantage of seeing patients virtually is that we are no longer constrained by venue size. We can therefore deliver more sessions to reach more patients for lower cost, which is excellent value for money. The interactive digital portfolio has the potential to not only significantly enhance the patient experience and improve outcomes, but also to reduce pressure on overprescribed services.
Feedback
Feedback from patients who have participated in sessions and engaged with the platform has been fantastic. It shows that these initiatives deliver personalised care that is valued by patients. Not only can sessions be delivered more often at less cost, but the resources available through the platform can be accessed by patients at a time convenient for them. The feedback demonstrates that patients do not have significant problems accessing the digital platform and that it is a huge resource for preparing them for their treatments and changing their lifestyle.
Furthermore, the online platform has allowed CCNSs to signpost patients to resources, and the online sessions have contributed to improving the patient experience. It has also helped reduce face-to-face clinic attendance and the time in clinic required for patients who have participated in virtual sessions. Patients have reported feeling better prepared for treatment and the clinical staff have been better able to triage patients to target individuals who require extra support.
The success of our initiative has been demonstrated through increased demand for virtual group sessions at the end of treatment and the patient evaluations have shown that there is a need for more information to be provided via video.
Another important point to note is that patients have reported that the digital platform has reduced their transport costs. Patients surveyed were found on average to live 6.2 miles from the Trust, with travel by car costing, on average, 57p per mile and parking £1.20 per hour. For patients using public transport, the cost of an open return ticket is £4.10. On average, the cost of an appointment works out at£5.52. (NB We are unable to consider potential loss of income and child care.) Figures from Macmillan show that 4 in 5 people (83%) are £570 month worse off following a cancer diagnosis.
Looking to the future
Collaborating with Gateshead Council and its ‘Thrive’ agenda has given us access to the necessary digital technology and a sound studio to record and produce podcasts and videos at cost price. This collaboration has allowed the Trust to connect with digital innovators to help us find the right solutions and technologies to solve problems, increase productivity and enhance patient care.
We are now looking to employ emergent extended reality (XR) technologies to deliver ever-more immersive means of delivering cancer care. The cancer workforce at GHFT is committed to delivering the best possible care and together we will strive to innovate and improve services for our patients.