Patients, their health and the Phenome
“I have 8 conditions. I want to know what this combination of conditions means for my prognosis, lifespan, disability, and future work possibilities. I should have the right to help define the phenotypes that apply to me, and work out how they fit together to see how my future life will be shaped by my health”
Patientparticipant in PhenomicsforPeopleAction Group
Phenomics for People ActionGroup
We have establishedthePPAG to address the rights and demands being expressed by patients in relation to a wide range of conditions.Working from basic principles of ‘not about me, without me’ thePhenomics for People ActionGroupwillworkclosely withour research community to identify priority areasandco-produceresearchwiththe academic communitytodemonstratethe impact of our research for patients.
Putting risk information in the hands of patients
Patients tell us that there is remarkably little available information on risk, specific to their age and condition. For some conditions, doctors use risk tools that do not relate to ‘patients like me’– the specific conditions a patient has.To begin to address public demand for risk information across a wide range of conditionsresearchers in theDDRare developing toolsand resources to allow both patients and clinicians to understand an individual’spersonalrisk from a given condition(s).
OurRisk.Covis a prototypeonline tool whichuseshealth recorddata to estimate a patient’s risk of excess deathas a result ofthe COVID-19 pandemicover aone yearperiod. An excess death is defined asadeath that would not occur in a normalyear, butis at risk of occurring due to COVID-19. Using thetoola patient can understand their “normal” risk of death, taking into accounttheirage, sex and a number of underlying conditionsthey may already suffer from (cardiovascular diseases, COPD, and diabetes).
The tool also allows patients toexplore how that risk would be affectedby COVID-19, under different levels of transmission within the population.TheOurRisk.CoVrisk calculator has hadhad 1.3 million pageviews from 636K users across the world. The risk calculator was featured inThe British Heart Foundation’s article ‘’.
Whilst currently focused on theexcess riskfromCOVID-19, the research team has ambitions to develop the tool to allow patients to understand their riskinformationacross awidernumber ofhealthconditions.
Meet our Phenomics for People patient and public advisory group
As well as:
Jean Gallagher
Ayath Ullah
Rebecca Harmston
Sarah Markham
Read the 51 Case Study
Case Study: Risk calculator developed to show how underlying health conditions can affect mortality rates in COVID-19 pandemic .
Fullpublication:Banerjee A,PaseaL,Harris ,et al.Estimating Excess 1-Year Mortality Associated with the COVID-19 Pandemic According to Underlying Conditions and Age: A Population-Based Cohort Study.The Lancet395, no. 10238 (2020):...
Get involved
Opportunities include co-creation of research projects, reviewing funding and project plans, contributing to the development of specialist tools and methods, andco-producing patient facing materials, educationaltoolsand training.
ContactNatalie Fitzpatrick,PhenomicsPublic Involvement Lead.