Cognitant has added five rare disease charities to its bank of approved content partners as it builds the go-to source for trusted health information using its digital platform, Healthinote.
The charities, which include AKU Society, Niemann-Pick UK (NPUK), Pompe Support Network, The Cure & Action for Tay-Sachs (CATS) Foundation, and Support and NCBRS Worldwide Foundation, join a bank of 40 trusted partners for the company.
The digital tool from Cognitant which is integrated with the triaging and remote consultation company, eConsult, can be accessed by over 3,000 GP practices to serve over 29 million patients in the UK. It helps to provide GPs and patients with recommended, trusted, clear information, that can be viewed outside of consultation time.
There are over 7,000 known rare diseases and it is reported that 1 in 17 people will be affected by a rare disease at some point in their life. Many individuals experience “diagnostic odyssey” with the average time to receive a rare disease diagnosis taking four years, often because symptoms may not always be evident to healthcare professionals.
Rare disease patients face unique challenges in their everyday lives and information is hard to come by. By adding trusted sources of information from key rare disease charities in this field, Cognitant aims to change this for patients and their families.
The UK Rare Disease Framework, published earlier this year, outlines the need to increase awareness of rare diseases through digital resources among healthcare professionals. The framework also highlights the value at providing educational and support materials on how best to care for a rare disease patient in digital formats.
The aim of Healthinote is to help people of all ages and abilities to have the tools to understand more about their disease or illness and manage their health effectively by empowering them to take control of their own health.
John Lee Taggart, communications and campaigns manager from Niemann-Pick UK, said: “A Niemann-Pick diagnosis, like many rare diseases, can initially be both a bewildering and isolating experience for patients, families, and their loved ones. Trustworthy information and support networks you can rely on become essential. We believe our charity’s partnership with Healthinote will improve access to vital and verified information for both patients and health professionals alike and will therefore broaden the community of individuals we support.”
Dr William Evans, a GP at Oakwood Surgery and chair of Niemann-Pick UK (NPUK) said: "As a GP, it is invaluable to have access to the Healthinote database of health information and tools that I know has been verified for healthcare professionals and patients. This helps me to give the right information to patients and carers, at the right time.”
Lee Reavey, co-founder and chief executive, NCBRS Worldwide Foundation said: “With fewer than 220 confirmed cases worldwide, even most of the medical professional have never heard of Nicolaides-Baraitser syndrome (NCBRS). This is why we are proud to become a partner of Healthinote, many of our families have waited years for a diagnosis and when they do receive it, it can feel bewildering and hard to find all the information they need. We truly believe this partnership will enable reliable, trustworthy information that is all in one place to be accessible by patients and medical professionals alike.”
