> Person-centred, developmentally-appropriate, needs-led interventions and support for teenagers and young adults (TYA) with cancer
> Enabling supported self-management and personalised care
> Patient is at the centre of the care they receive and can communicate digitally with their care team
The IAM (Integrated Assessment Mapping) Portal is aimed at delivering emotional and clinical support to teenagers and young adults (TYA) with cancer.
The project is under the clinical leadership of University Hospitals Bristol NHS Foundation Trust and the Teenage & Young Adult (TYA) South West Cancer Service, supported by Teenage Cancer Trust, Macmillan and Sitekit.
Teenagers and young adults with cancer can feel lost and overwhelmed with their diagnosis, treatment and aftercare. The guidance they receive is often aimed at older people and doesn’t take into account the individual’s specific needs or situation.
The project team set out to provide TYA cancer patients with a holistic, age-appropriate digital pathway that would allow those affected by cancer to maintain or regain control over their lives, in collaboration with their care team.
Technically, the service needed to allow the registration of patients, collecting robust data about the patients and their needs. It also needed to be accessible through a mobile app and support multi-disciplinary teams in a clinical setting.
Sitekit and the IAM Portal project team ran a series of engagement exercises with teenagers and young adults with the objective of making sure their needs would be met in the final design. Through these engagement sessions, the project team gained a deep understanding of the processes that the digital pathway had to enable to drive maximum value and derivation of benefits.
For instance, the focus group indicated that psychological and emotional support during the patient journey had often been missing or perceived as inadequate. Many of the patients also expressed a need for help in staying motivated or had specific needs such as support in dealing with brain fog.
To ensure that each TYA patient would receive the best possible care and support, the team created three interconnected web services:
‘Help! I’ve got cancer’ (http://www.tyahelp.co.uk/) is a psychological and emotional well-being site with information and advice specifically aimed at teenagers and young people. The website and contents of the website were created by TYA patients for other patients: the visual design of the website was entirely created by a service user and on-going content creation and curation are the collective responsibility of an end user group.
The IAM website and mobile app (https://tyaiam.co.uk/) offers patients a specific, age-appropriate holistic self-assessment tool which they can use to explore and document their needs and obtain information and support from an integrated framework of resources.
Unique to the service is the option for patients to share their self-assessments (released only by patient permission) with their supporting clinical team, which helps clinicians to build individualised care plans.
TYA services and provider Trusts have access to a database for managing MDT (multi-disciplinary team) activity and documenting its discussions. They can also access the database for reporting activity, analysing patient need and assessing service demand.
In addition, the NHS and its Voluntary Sector Partners have access to reports of aggregated data from anonymised patient records providing a profile of TYA patients and their needs. Data output from the web app has enabled the service to better identify and capture the support needs of all TYA cancer patients in the South West.
Each young person’s needs are individual and require person-centred, developmentally-appropriate, needs-led interventions and support. The ‘Help! I’ve got cancer’ website, IAM website and mobile app and SWIMMS patient database all contribute to a more informed, connected health system that places the patient at the centre of the care they receive.
The digital service shows young people that their care team understands they are more than a cancer diagnosis or treatment plan and that all aspects of themselves interact and mutually influence their experiences and outcomes.
Moreover, the service supports partnership working between patients and their care team, supporting re-engagement with life as it would have been without the intrusion of cancer or as the patient decides to recreate it.
We wanted a way to help young people think about their needs so that they can get on with their lives during and after cancer treatment.
The IAM Portal offers a whole system solution - a framework for self-assessment, supported by quality assured advice and information, and linked into the professional team. It helps us manage our MDT discussions, provides information about clinical activity and offers a profile of patient needs against which we can plan our service for the future.
Sitekit have been the ideal partner in translating our concepts into a practical online solution.
Professor Mike Stevens
Director, TYA IAM Portal Project
If you'd like to learn more about this project, please don't hesitate to get in touch.