Meeting the challenges of living with a rare disease

Helping turn insights from the rare disease community into ideas at RAREsummit21

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Published: 15th October 2021

Rare diseases innovation challenge finalists featured in live pitching event

Eastern AHSN partnered with the Cambridge Rare Disease Network (CRDN) to develop innovations in response to a survey we ran in partnership on the needs of people living with rare diseases.

One of our priorities to address the everyday issues our citizens face through better use of innovation. To do so effectively, we needed to listen to those with lived experience to understand their challenges. We gathered insights provided by the rare disease community through a survey launched last year at the CRDN’s RAREfest20 event. These insights informed the key areas of highest need.

The live pitching session conducted at RAREsummit21 was the culmination of a competitive process where healthcare innovators submitted their rare disease solutions to us and were judged by a panel of expert judges based on their ability to meet three challenge statements developed through analysis of the survey responses. On the day we featured five selected innovations with the potential to improve the lives of people living with rare diseases.

Our challenge statements:

  1. How might we use digital technology or AI to improve access and availability of clear, reliable health information about rare diseases for patients, family members, healthcare professionals and/or members of the public?
  2. How might we use AI and digital technology to improve coordination of care for people living with rare diseases?
  3. How might we use digital technology to maintain wellbeing and reduce mental fatigue for people living with rare diseases?

Meet the innovators:

  • Ascelpius Digital by Sundown Solutions — an app to enable secure and immediate access to pertinent health care records for specialist consultants, underpinned by an online portal and wiki to provide the latest information on conditions.
  • Medwise.ai — Providing healthcare professionals with vetted and contextualised knowledge about the treatment and management of rare diseases.
  • Noink – real world data capture and information for rare disease patients and their families to improve care. A tool for rare disease families to diarise their condition(s) for the benefit of themselves and their clinical teams.
  • Thriving AI Limited — a tool that integrates formal and informal health and social care around the person being cared for and is underpinned by machine learning and AI capabilities.
  • Collaborative decision making by Vitaly – a collaboration tool to support multidisciplinary team meetings (MDTs) with a complete and up-to-date picture of the patient data for healthcare professionals.

Everyone who submitted an application will receive innovation pipeline support from Eastern AHSN healthcare innovation experts, but on the day the audience voted Medwise.ai as the solution which best met one or more of the identified challenges. Medwise.ai uses AI-powered search to allow clinicians to instantly access answers to their clinical questions. The tool is designed to improve clinical decision making through enabling fast access to relevant and reliable specialist information and evidence. Previously it has proven in other conditions including keeping clinical teams up to date on the latest research during the response to the COVID-19 pandemic.

The session closing summary was given by Dr Louise Jopling, Commercial Director at Eastern AHSN, who reflected afterwards:

“We were blown away by the quantity and quality of the entries we received and even narrowing it down to five was difficult. We know that great ideas only make an impact when they are put into practice and I hope that through this innovation challenge we created connections which can improve the lives of the millions of people living with or supporting someone with a rare disease.”

Jo Balfour, Managing Director at the Cambridge Rare Disease Network, added:

“RAREsummit is all about raising awareness of rare conditions and their impact on patient groups and this year’s focus was celebrating the power of patient group and industry collaboration for positive impact. The rare disease innovation challenge shows what can be achieved when we start with patient insight and work as a community to address challenges.”

You can visit the virtual event and watch the recordings of each session for 30 days until 7 November 2021 at https://www.camraredisease.org/raresummit21/

If you would like to find out more about the innovations who presented during the innovation challenge session, you can find out more by downloading the pitch information pack.

View the session

If you have a great idea that could make a positive health impact, we want to hear from you.

One of Eastern AHSN’s priorities is to support the development of innovations which improve the everyday lives of people living with rare diseases. We have a wealth of expertise in helping innovators turn their ideas into positive health impact.

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Read about our work in rare diseases

Dr Louise Jopling, Commercial Director at Eastern AHSN, explains how we are working to improve the diagnosis and treatment of rare diseases across our region and beyond.

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