How pooling resources could support professionals: Insights into developing information hubs

Interviews with Professor Di Harcourt (CAR) and Luke Langlands (Tuberous Sclerosis Association) at the VTCT Foundation July Showcase.

During its Legacy Programme research, the VTCT Foundation identified centralised hubs of information and training as a priority. Consensus from Appearance Collective members was that these would help professionals recognise conditions that cause visible differences, understand their impact and refer earlier to specialist support.

Collaboration in action: CAR’s information hub learnings

At this summer’s London Showcase, Professor Diana Harcourt introduced the Centre for Appearance Research (CAR)’s new Visible Difference Support Hub and shared key learnings from the project.

The hub aims to provide evidence-based insights to better support the visible difference community. CAR therefore decided to create a centralised hub to make their findings as easy as possible for people to access.

With the team developing the site alongside their ongoing research work, the hub took a year to bring to life after being funded. Diana explained how they had not only sought input from Appearance Collective members before devising the site’s format, but also adjusted budgets to compensate the 12 charities involved for their time.

By bringing together a mix of charities in the advisory group, and involving the intended users in development, CAR was also able to improve the site’s navigability and make it more inclusive. This feedback resulted in an accessibility button which lets visitors customise the site to their individual needs, from changing colour, light contrast and text size to introducing a reading mask tool that creates a focused ‘letterbox’ window.

Another area of design the charities helped shape was the site’s imagery. Recognising the range of visible difference conditions and the limitations of stock images, it soon became clear that the budget was not big enough for a bespoke photoshoot. Instead, CAR commissioned a UWE student to create bespoke illustrations that reflected the diversity of conditions, ages, groups (individuals and families) and body shapes affected.

Breaking down the knowledge barrier, one module at a time

One challenge that unites most resource-stretched Appearance Collective members is how to make the biggest impact for people with visible differences in the face of limited budgets and staff.

When The Tuberous Sclerosis Association (TSA) identified how a large chunk of their support team’s time was being spent repeating the same information, it made a strategic decision – to invest time in creating a central medical resource that would boost its ability to help more people in the long-term.

Presenting at the London Showcase, the charity’s co-CEO Luke Langlands explained how patients pay the price when specialist knowledge is lacking. In their case, GP’s limited familiarity with the rare Tuberous Sclerosis Complex (TSC) genetic condition left patients struggling unnecessarily, resulting in treatment delays and medication access issues.

Its solution to tackling this knowledge gap was to create a CPD-accredited online training platform designed for busy healthcare professionals. The modular format will let time-pressed GPs access exactly what they need, when they need it, through a mix of audio, video, and text content that suits different learning styles.

Drawing from the team’s experience of devising information hubs for social care and education professionals, the charity recognised this version would need to go into greater depth to cater for both primary and secondary care clinicians. Like CAR, TSA has pursued feedback from partners and patients throughout the process, and will seek out GPs less familiar with the condition during the testing phase before the site goes live next spring.

Tapping into the insights of colleagues at the TSC Rare Disease Collaborative Network, the charity determined that existing resources were either too in-depth or not in-depth enough. Their solution was to create a range of information options that users could dip in an out of, whether they had 30 seconds or several hours to spare, or a specific area of interest – such as TSC-related epilepsy – in mind. These would then include links to further information if it was required.

When it comes to determining the success of such a project, Luke explained counting how many people had completed the training wouldn’t tell the full story for such a rare condition. Instead, they will be encouraging clinicians and the TSC community to give their own feedback. And they are hopeful that a decrease in the number of people with the condition reporting how their GPs don’t understand it will show the site is working.

What shone through from conversations at the July London Showcase was the importance of collaborating with users along the way.