Ilsa Parry
NHS Patient Engagement Portal
Context
The NHS Herefordshire and Worcestershire Integrated Care Board (ICB) is responsible for improving health outcomes for a local population of 800,888 people, with a mix of urban and rurally dispersed communities across two of the largest counties in England.
Their broad aims are to reduce health inequalities and support broader social and economic development. One of many initiatives aimed at a move towards these aspirations is their “shared care record”.
I was responsible for leading a team of UX researchers and service designers, working in partnership with the ICB to deliver a comprehensive health and wellbeing portal that integrates with the shared care record. This would create a joined-up approach to health and care, enabling people to access and manage all their health data to ensure empowerment and supported self-management of health conditions regionwide.
Problem
The client’s wider goals for the project were ambitious. In the first instance however, they wanted to build a portal that would cater to the needs of staff, patients, and families in both acute and community services, in order to validate increased region-wide access to informed family decision-making in relation to improved health outcomes, and thus independence to reduce clinical time spent.
Our team worked with the ICB to produce a problem statement and business case to produce a product canvas to align objectives, it was ultimately agreed that the portal should:
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Support self-management of patients’ health and well-being, providing them with the means to monitor and manage their health through the shared care record
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Reduce the chance of lost letters and confusion about appointment dates and times
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Increase patient engagement, bridging the gap between patients and health professionals
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Provide real-time data by allowing patients to rectify any inaccuracies in their personal records
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Improve patient trust by providing a user-friendly experience
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Reduce Subject Access Requests (SARs) made to health providers
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Reduce the need for face-to-face hospital appointments, through access to information, video conferencing, and new care pathways
Epiphany
We realised that as an organisation, we were able to quickly and confidently deliver in many of these areas through the deployment of modules and features in our pre-existing patient engagement portal (PEP) “Maia”. In addition to the standard features such as appointments, health trackers, questionnaires, diaries, goals, coping strategies, resources, circle of support, and messaging, we worked with client participant user groups to undertake discovery, which helped us realise that the following additional features would potentially meet user acceptance criteria to satisfy our user stories and hypotheses in relation to how the client might reach their more ambitious goals. These included:
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Clinical encounters, a section of the platform that historically populates “episodes of care” with associated information such as care providers, treatment plans, and associated medications.
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NHS Login/authentication process for robust safety and security
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Personalised health onboarding journeys and customisable dashboards with individualised recommendations based on information provided by the user relating to diagnosis, lifestyle, or set preferences
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Advanced accessibility features beyond WCAG 2.1 to cater specifically for the visually impaired
The regional scale of this project meant that it faced many challenges in satisfying the agenda of multiple stakeholders. The ICB project managers had a clear focus on the shared care record integrations and the clinical teams had very specific feature requests to enhance clinical management of their patients. The patient engagement group was very much focused on platform usability, language, and accessibility features, particularly for those with impaired vision. Furthermore, the earlier OAMHS project had to be absorbed into the regional portal which caused some internal tensions within the client team related to changing project direction and how best to manage the varied priorities.
Actions
To successfully manage the needs of all stakeholders and argue the case for prioritising the needs of the user for enhanced engagement and uptake, I ensured that the team remained consistent throughout the process, retaining in depth knowledge of all user needs from discovery, and priorotised organisation of the user journey to the most commonly cited requirements stated by users themselves.
Carefully balancing this with the findings from the organisational problem statements in the business case and available budget, we were able to prioritise and refine hundreds of user stories into organised epics as a proposal to senior leaders to change the direction of travel and satisfy the 80:20 rule in relation to the features that might be most commonly used to satisfy the business requirements as a direct result of the insights derived from discovery, with particular attention to security and governance when patients added a proxy user to manage care on their behalf.
We carried out service blueprinting to identify touchpoints in the proxy flow that might demand development of front and back stage actions to reassure the user and ensure organisational capability and used this information to develop alpha sprints which in the first instance involved the design of wireframes and userflows to help first time users login seamlessly and with minimal data input. This would then authenticate both patients and carers, populating their dashboard with the features that held most potential to assist them in achieving patient self or family monitoring and more independent management of their health goals.
We ensured that this process would allow further customisation to the patients specific health needs by way of diagnosis, pathway and treatment identification, and health history population via their NHS number or NHS login. This method of user verification would also provide access to their health history, letters and appointments by way of an API, so all relevant information could be provided to reduce Subject Access Requests (SARs) made to health providers and the need for face-to-face hospital appointments, through access to information, video conferencing, and new care pathways.
In order to make the platform user friendly, fully accessible and engaging, we ran several workshops in alpha phase, inclusive of card sorting, tree testing, A/B tests and moderated usability studies. which revealed a number of actionable insights for improvements to the user interface , information architecture, user journeys and content.. Following a few rounds of iteration, and Flesch Kincaid content modification, we were able to validate design direction and produce prototypes for unmoderated usability testing in the form of diary studies prior to coding in the user acceptance testing environment.
Result
The platform was further tested and tweaked in Beta and then launched in 2023. It has already seen numerous benefits for the ICB, its staff, patients, and families including:
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Increased self-management by individuals through access to their own health records and data, empowering patients to take a more active role in their own care
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Increased transparency between NHS organisations and citizens allows patients to get a more complete picture of their health and to make informed decisions about their care
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Reduced “did not attend” (DNA) rates by allowing patients to book and reschedule their appointments online.
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Reduced postal costs by allowing patients to access their letters and to communicate with their clinicians online
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Reduced unnecessary follow-up appointments by allowing clinicians to track patients' health data and identify any potential problems
Furthemore, as a direct result of robust accessibility modifications and content design, an independent external audit from the RNIB verified that the platform was fit for purpose for those with sight impairment, inclusive of keyboard navigation and screen reader compatibility, with proper semantic markup, alternative text for images, colour contrast options, and audio communication where relevant.
Challenges & learnings
Working with such a large range of stakeholders meant that organisationally, new procedures, processes, communication methods, and ways of working had to be developed to guarantee success for all. Particularly as the majority of the project development ran through the pandemic, resulting in high staff turnover for all organizations involved, resulting in a lack of shared understanding, scope changes, and delays in teams getting back up to speed, it was also evident that allocated budget was hugely insufficient for the scale of ambition in terms of realising fully usable outcomes for such a broad demographic.
It was clear that very few client-related stakeholders understood the value of allowing the UX professionals to facilitate both research and service design fully, using their own tried and trusted processes due to a fear of overpromising users, creating something too experimental or facilitators not being fully aware of clinical governance procedures.
From this project, I learned much in relation to managing client expectations and the importance of reassuring them from the outset, both in terms of the mutual benefit to be desired from understanding the concerns, blockers, and expertise of both the client and the supplier thoroughly. I also learned the undeniable value of organising teams, processes, and reference tools in such a way that knowledge can be retained, fully understood, and transmitted throughout the various teams as they change over time. I also learned the vast importance of team activities being agreed upon upfront and weighted in terms of perceived value to the project, balanced with the available budget.
These learnings resulted in my transition to head of design operations at Mindwave where I instigated a number of new initiatives to be implemented throughout the organisation, including:
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Templates for all user research workshops, inclusive of aims, purpose, and projected outcomes to ensure value added could be predicted in line with effort and cost
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A research repository, featuring all learnings as user stories and acceptance criteria with proposed hypotheses and matching feature solutions
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A digitised method of participant recruitment for both in-house alpha user testing and external beta usability testing in specialist areas
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A new GDS-aligned framework that guides multifunctional teams through a range of potential collaborative activities that can enhance and facilitate user-centred service design
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Documentation evidencing platform usability validation feature by feature for client reassurance
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Market trend alignment by way of regular stakeholder engagement as a method of sense-checking design direction and gleaning governance-related insights from clinical leaders
Impact
Client quote:
"The team delivered a fully accessible regional NHS portal providing access to customised NHS data, health guidance and co-ordinated care for 800,000+ citizens in the region"