Trustee Annual Report
As part of the charity’s governance, a Trustees Annual report is filed each year with the Charity Commission. This includes details of our work and finances. The latest report filed details achievements in 2022, which included:
1) Accelerating the path to diagnosis for long-term undiagnosed patients
Our principal voluntary project progressed the development of Million Minds as a smart app to help doctors and patients to an accelerated diagnosis for rare diseases and medically unexplained symptoms. This will enable significant savings in health service costs by reducing the wasted resources applied to failed pathways to a patient’s diagnosis. Million Minds uses the combination of collective wisdom from the internet and medical research reference together with a patient’s holistic and lifestyle analysis, in order to present the analysed data to inform the patient and their doctor.
We have expanded the diagnostic model to include 6000 conditions (2021: 600 conditions with 6000 symptoms). The model has also been enhanced by the inclusion of relationship data. Relationships include symptoms, risk factors, complications, common co-morbidities, and common misdiagnoses.
During 2022 we engaged six clinicians to validate Million Minds outputs from the diagnostic model which showcased the value that social media data can bring to analysing the experience of patients in relation to a disease. Several of the symptom associations that clinicians did not deem significant proved to be very important to patients. We will continue to recruit clinicians across the spectrum of disease specialisms.
We have shared the Million Minds capabilities with a range of healthcare providers and charities and through this have identified other use cases for the model. This offers an opportunity to use the model beyond the purposes of accelerating diagnosis and add value to a wide range of patient research initiatives.
2) Collaborations were established for potential projects with charities Cancer Research UK, Great Ormond Street Hospital, British Heart Foundation.
3) A live streamed panel presentation on Artificial Intelligence in diagnosis and medical research was given at the Pharma Integrates conference in London. A webinar for Learn with Nurses was also provided on equality in cardiovascular care.
4) We completed and presented the research brief by University of Oxford regarding diagnosis and treatment experience of Fibromyalgia patients. An academic paper is being drafted with our input.
5) A collaboration was established between a Professor of Clinical Bioinformatics at the Genomics Institute at the University of Birmingham to map phenotypes discussed by patients within social conversation back to genetics to improve the diagnosis of rare diseases. A paper is in development to share this research.
6) A case study is published on our website relating to treatment options for Central Post Stroke Syndrome for a patient in USA. The feedback from the consultant physician acknowledged our valuable contribution.
7) Two commissioned projects for major global pharma companies were completed. and collaborations with three life science consultancies in UK and USA are producing several leads and commission proposals.
8) Through increased organic growth in marketing activity during 2022 we have seen an increase in website users of 23% and increase in impressions on LinkedIn of 140%.
