Ijeoma Azodo: February 24, 2021
In our latest interview, Ijeoma Azodo, Associate Director for Clinical Service Design, talks about NDS’s work on Cancer Treatment Summaries and what it means for the National Digital Platform for health and social care.
Q. Can you tell us about the current issues facing cancer treatment?
If we think about the current situation, it’s clear that cancer treatment has been affected by the COVID-19 pandemic. Public Health Scotland recently reported a 40% decline in cancer diagnoses across Scotland in the first few months of lockdown (March – June 2020) compared to the same time period in 2019. Our national cancer screening programmes were initially paused, resuming in Autumn 2020 as part of remobilising non-COVID-19 critical services. Through our research on this project, we’ve heard from clinicians concerned that people with manageable cancers might not be presenting themselves to their GP or for cancer treatment services.
Due to the current pandemic, cancer care teams are describing the changes they need to make in terms of how patients are looked after. For some, the frequency of clinic visits are changing… if the post-treatment visits were monthly in person, they are now monthly but virtual, or by telephone, or in person at 3 months with telephone contact in-between. For some cancers, the types of treatment offered may be adjusted, so all of these change the way patients are cared for.
Speaking to surgical colleagues, the operative pathways have adopted protocols to minimise patient exposure to COVID-19. Infection with COVID-19 during and after surgery is associated with worse outcomes. The cancer teams are always available, but patients may be reluctant to reach out and stop by the GP Surgery for a check-in, where problems can be spotted and flagged to the cancer team.
It’s clear that cancer clinicians are adjusting what they’re doing while trying to deliver the same quality of care – that’s a challenge. The next step is looking at what has worked, what needs to re-instated, as well as looking at care outcomes to see where we can improve outcomes and experience.
Q. NDS has been working on a Cancer Treatment Summary? Can you tell us what that means?
A Cancer Treatment Summary is a record of care about what’s has happened over a patient’s cancer care journey. It captures the type of treatment, its goals, and provides an ongoing plan or reference for patients and their carers.
Historically, it has been a document (or several documents) which try to help people understand more about their care and treatment in a way that’s easy to understand. It’s designed to be used by both patients and Cancer Care teams.
At a minimum, it summarises the intention of a treatment, for example, removing the cancer completely or managing a person’s symptoms adequately while leaving the cancer in place for various reasons.
If long term effects of the cancer or its treatment are known or common, the Summary highlights the symptoms a person might experience and offers a signpost or guidance that may be used to seek further support or help people manage themselves. The Summary therefore helps the patient feel in control of their own treatment by supporting them to care for themselves. This is helpful to the patient and the healthcare professionals caring for them.
It’s also a place that brings together everything about a person’s cancer care, signposting them to their GP or health practitioner, as well as helping them understand what specific elements of treatment mean for them, be it around diet, activity or wellbeing.
It’s designed to be easily understood, without too much jargon or technical language. I say place because with the platform as our foundation, we have more options than two sides of an A4. However, also taking the A4 constraint as a guide, the summary should not either be an unwieldy catch-all.
With the capabilities of the National Digital Platform for health and social care, there is the option to do more than a document. A multi-channel, multi-media product will improve our access to patients and really take advantage of the technology by tailoring the document content and layout to the user’s needs.
In the cancer treatment summaries project, NDS’s role is to work with our partners to design the presentation of information at the level and detail most useful to patients and GPs, align with the care workflow and build on routine clinical documentation.
Q. How did this work begin?
It’s important to say that this project is an evolution of a longer piece of work that began in Scotland in 2014/2015 called the Transforming Care After Treatment (TCAT) programme (now TCC) started by MacMillan Cancer Support. While building on their work, we are working in partnership with the Innovative Healthcare Delivery Programme (IHDP) to understand the minimum amount of clinical information needed from Secondary Care (the cancer care teams) to make this process useful and relevant for both patients and Primary Care teams.
Following the TCAT evaluations, it was found that there were some issues that made the Treatment Summary practical at a national level. It was fairly time intensive and costly to build what is, in essence, an Electronic Patient Record for cancer care. Individual Health Boards involved in the project also found it difficult to scale up in a way that would work at a national level.
Since NDS was established in 2018 to create a National Digital Platform for health and social care, our work has been about creating products and services that can be used once for Scotland. This also applies to our partnership with IHDP on the Cancer Treatment Summary.
Q.What do you think are the key challenges to this work?
When we think about a product that can be used at a national level, we need to learn where good practice is and consider how we can replicate those key principles. We also need to find out if there is variation in treatments and outcomes and think about how can we present information in an accessible way to patients.
With the two cancer types for the first version of our digital Treatment Summary, we have an appropriate amount of variation and complexity to anticipate what is needed for other cancers. There are also good similarities that allow us to learn from the cancer types. Both cancers types are organised within regional care networks, are solid organ tumours, with the treatments and cancers impacting a person’s well-being and daily functioning.
Another challenge is around tailoring information on different types of cancer for patients. Different cancers require different treatments, so we need to capture that information and present it to patients in a way that suits their specific situation. For example, if a person is being treated for lung cancer, their treatments might affect the ability to breathe or undertake a certain activity. That person will have a different experience to someone being treated for breast cancer. Balancing our guidance is key – we want the information to be specific enough to individuals but general enough to be hosted on the National Digital Platform.
We are considering how a Cancer Treatment Summary would work best in a practical sense. We have an advantage in using technology that’s adaptable, so we need to think about how we record a person’s symptoms, treatment, and outcomes and share that information back to patients and the care team.
To start, NDS is focused on sorting out the basic challenges, such as building the databases, modelling the data, and designing the interface and content. We also need to make this basic functionality work while also being bespoke and developing connected units (think Lego!).
Q.What are the opportunities?
I think there are many! Cancer Treatment Summaries are a miniature version of the data capabilities needed to sustain health and care transformation and an example of the units needed for a product on the National Digital Platform (Figure 1 below).
One of the opportunities is to make signposting more personalised so the Treatment Summary is useful for individuals with their own specific experience. For example, if a patient has had an operation affecting their mobility, they could find guidance on this in their Cancer Treatment Summary.
It goes without saying that when a person can see guidance that matters to them, that relates specifically to their situation, the more supportive that information is. By tailoring information to people, the information in a Cancer Treatment Summary can reinforce the invaluable care provided by the Cancer care team, as well as helping patients feel connected.
As with all of our work on the National Digital Platform, our intention is to ensure people, both patients and health and care staff, have better information when they need it in a safe and secure way, and more knowledge that improves a person’s quality of care.
Q. What are the priorities for future work?
One word … Delivery!
The Cancer Treatment Summary adds value to care. In our design and build, our approach looks for the critical elements that are most useful for patients, clinicians in Primary Care, such as GPs, and Secondary Care, such as Cancer Care teams. We want the Summary to enable productive conversations with the Primary Care team, so patients can speak confidently with their GP, and GPs know what the patient has been told.
We also want to avoid duplication of effort and information. Currently, a person with cancer receives similar pieces of information. We want to fill a current gap in a way that’s relevant, appropriate and links to the quality information and resources already available.
For the patient, we want to make sure that they feel supported, to understand what’s happening in relation to their treatment and to ensure they know how to access support when needed. We also need to show where this adds value to a person’s experience of cancer care.
We are bringing together a lot of analyses over the next 6 months. We are working with our project partners, IHDP, as well as Health Board's eHealth and Digital teams, clinicians and cancer teams. We're also speaking to patients to ensure the Summary is useful to everyone involved in the process.
For the future, we'll be looking at how the Cancer Treatment Summary connects to regional and national priorities and developments, enables useful decision support, as well as connecting to other products on the National Digital Platform.
This image shows cancer treatment summaries as a foundational product for the National Digital Platform and how it connects to major areas of transforming healthcare through technology.
The major areas are care pathways & services, patient experience of care, national statistics, genomics and laboratories and patient / public-generated information. Care pathways & services and national statistics (solid-solid lines) are closely connected as population health and coordinated care.
Currently, patient experience of care (solid-dashed lines) is appreciated as a missing (and much needed) input to inform and qualify the more technical measurements of quality and outcomes. Further (dashed-solid lines) from actionable usage are the connections of genomics & laboratories and patient / public-generated information, though these areas are well-developed. Next level capabilities, like decision-support, machine learning, and innovative new services are enhanced by the major areas working in sync.