Open-OH offers the Widespread Pain Index (WPI) and Symptom Severity (SS) scale which is a patient-reported outcome measure (PROM) commonly used by many clinicians for assessing widespread pain and other symptoms as part of the American College of Rheumatology (ACR) fibromyalgia diagnostic criteria.
Whilst other PROMs exist and are used across different services, no single gold standard measure exists for Fibromyalgia yet as the condition lacks a definitive diagnostic test, and no single existing PROM has been proven to comprehensively and reliably capture the full range of symptoms and severity across all patients
With that said, we are working with University of Leeds on their NIHR-funded HERITAGE study which will review clinical service provision in the United Kingdom to consider how clinics should appropriately assess chronic conditions including Fibromyalgia to support their patients, which will help Open-OH continue to grow!
For now, users can share their WPI-SS outcomes with health professionals where available which is an internationally recognised tool
Access free support resources from various trusted sources including Fibromyalgia Action UK and more as the app grows to learn management strategies routinely deployed in clinical services and other support available in your region.
NHS ME/CFS and Long Covid services in the United Kingdom, many of which offer support for Fibromyalgia in ME services in particular.
Open-OH aims to list available NHS services that still remain and are open to referrals, though this is subject to change as services close and new ones open.
In the absence of publicly funded services, we may list private services including third sector (charitable) organisations and peer support groups, to provide our community with more options in their region.
In the future our international users outside of the UK will be able to find services in their territories, for example in Republic of Ireland where ELAROS is supported more publicly funded services.
We have a long-standing history supporting NHS services since 2020 with our digital C19-YRS platform that was recommended in NHS England’s national guidance and commissioned nationally by NHS England for all Scottish Health Boards.
Since supporting over 65 health organisations, 30,000+ patients, numerous research studies and collaborated with world-leading experts, charities, and clinical societies, there has been an undeniable trend towards establishing integrated long-term condition management services and condition-agnostic services which aim to support people with diagnosed Fibromyalgia or a presentation of related symptoms alongside others like ME/CFS and Long Covid.
We believe that, with our knowledge of NHS service provision and all its flaws and limitations, along with the support of our huge clinical network, academic collaborators, and community of people with lived experience with Fibromyalgia, we can help people, patients and clinicians alike with a range of solutions accessed at home or clinic as Open-OH continues to grow.
ELAROS is currently working closely with University of Leeds, University of Oxford, Imperial College London and more on various research studies aimed at supporting people with chronic illness and clinical support services
As Open-OH grows, our app users will be able to keep up to date with news on our research and how to participate in upcoming research studies
Open-OH also has members of Fibromyalgia Action UK on our user co-design board and wider PPIE group to ensure that we always seek the views of people with lived experience on how to improve the app
Open-OH is still a work in progress and new features are continuously being added to support people with a range of conditions and severities.
At the moment, Open-OH offers guidance for health education, symptom management strategies, employment support and benefits advice, alongside validated clinical measures and daily monitoring tools which people with mild to moderate Fibromyalgia and other similar chronic pain symptoms and conditions can benefit from.
Our initial pre-launch version may not be suitable for those with severe of very severe Fibromyalgia, whose needs often require more intensive, individualised care from a qualified health professional, which Open-OH is not. We deeply respect the complexity of all experiences with Fibromyalgia and remain committed to finding more appropriate solutions for people and their carers.