Prometheus Health Technologies

Leveraging real-world evidence to empower and support patients
An EPIC project
Image taken from Prometheus Healthcare website
Could your health data make you money? That’s the question Prometheus hopes to answer, with a helping hand from EPIC’s research team. 
Designed to help incentivise people with rare diseases use their personal data to improve their health and wellbeing, Prometheus acts as a hub to connect patients with research organisations, medical device manufacturers, digital health innovators, and scientific institutions. The platform aims to improve the lives of patients with rare conditions by speeding up treatment and therapies through evidence-based patient information. Its goals of accelerating the advancement of disease knowledge while empowering patients to have control over their health data align with EPIC’s vision of helping to develop digital products and services that enable people to lead healthier and happier lives.  

Background

Co-founded by health economist Dr. Simon Leigh and academic researcher Dr. Sebastian Stevens, both of whom have extensive experience in the digital health and pharmaceutical industries, Prometheus was created to fill an unmet need that puts patients at its centre. Noting the difficulty that pharmaceutical companies have in capturing high-quality, real-world patient data and the slow speed at which new treatments are developed as a result, Simon and Seb found that: 
  • The only current options for life sciences organisations to obtain the information they require are to purchase THIN data (GP level), HES data (secondary care level), or IMS data (prescription level). 
  • There is currently no offering that could combine all relevant patient-level data points in one place, and account for day-to-day fluctuations in condition-management, as well as the interplay of multiple conditions. 
  • No existing technology offers this information to industry at a fair market rate, which reflects the inherent value of the data, and ensures any surplus is awarded to those making this possible, the users within the platform. 
Determined to fill this gap, they created Prometheus with the aim of facilitating a mutually beneficial collaboration between patients with rare diseases and research organisations that can use their health data to better understand the condition and improve treatment options. 

Nobody understands healthcare conditions better than patients themselves, so the goal of setting up Prometheus was to put patients at the centre of understanding rare disease, by enabling them to collect, own, and share their own data. The data that patients collect will be able to help them monitor and understand their day-to-day fluctuations and it will help healthcare providers supporting the treatment of individuals with rare diseases understand how the disease is affecting the person beyond having a consultation once every six months – quite often clinicians themselves may not have a solid understanding of a rare disease due to the very nature of it being rare.

Dr. Sebastian Stevens

How has EPIC supported Prometheus?

Having become familiar with the EPIC project through his work at the University of Plymouth, Seb knew it would be a helpful source of support in Prometheus’s early research and development stages. 
EPIC support (involving multiple team collaborators) has included conducting a systematic literature review, which the company is hoping to submit for publication in the next few months. The research includes public attitudes and experience toward sharing healthcare data, helping Prometheus understand potential barriers and enablers for their organisation from an end-user perspective at an early stage in the development process. They will use the information, along with results from a focus group of 25 individuals with sickle cell disease, facilitated by EPIC, to ensure that they design their innovation with user motivations in mind and allay any concerns about data sharing. The research with sickle cell patients has been submitted as an academic paper and accepted for publication in the Journal of Patient-Centered Research and Reviews. This early research stage was funded by a £4,000 Challenge Fund grant, which enabled Prometheus to complete its user discovery research among sickle cell patients. 
Other EPIC support has included an accessibility audit through Purple, which is in the process of being completed. 

The project has been incredibly beneficial to us,” he said. “It’s helped take us from ideation and concept through to MVP, which is obviously incredibly valuable for a start-up company to get as far as MVP. It’s been really valuable in helping us to ensure that our prototype is inclusive.

Dr. Sebastian Stevens

What’s next for Prometheus?

The Prometheus team are currently conducting a 12-week pilot study of their MVP, sending out structured surveys through their app in which 25 patients with rare diseases (including sickle cell, fibromyalgia, and lupus) are renumerated each week for collecting self-reported data (including symptoms, treatments, and demographic information). They hope to expand their methods in future to include data from wearable technologies and IoT (Internet of Things) devices.  
The company is applying for innovation grant funding to help them build a full version of the app, based on the prototype work they have completed with EPIC. They aim to complete this stage of their development process by the summer of 2024 and are hoping to expand their current team size as they develop their technology. Their process is deliberately slower than other start-ups to enable them to collect the supporting evidence they need to prove the value of their product. 

The idea of the technology is to be able to walk a mile in a patient’s shoes; to be able to understand how their disease affects them.

We’ve taken a more academic approach to the innovation journey. It’s far slower, but we’re publishing all the way along – we will have probably five peer-reviewed publications by the end of the year to support all the pillars of our business.