“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”
Patient participant in Phenomics for People Action Group
Phenomics for People Action Group
We have established the PPAG 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’ the Phenomics for People Action Group will work closely with our research community to identify priority areas and co-produce research with the academic community to demonstrate the 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 conditions researchers in the DDR are developing tools and resources to allow both patients and clinicians to understand an individual’s personal risk from a given condition(s).
OurRisk.Cov is a prototype online tool which uses health record data to estimate a patient’s risk of excess death as a result of the COVID-19 pandemic over a one year period. An excess death is defined as a death that would not occur in a normal year, but is at risk of occurring due to COVID-19. Using the tool a patient can understand their “normal” risk of death, taking into account their age, sex and a number of underlying conditions they may already suffer from (cardiovascular diseases, COPD, and diabetes).
The tool also allows patients to explore how that risk would be affected by COVID-19, under different levels of transmission within the population. The OurRisk.CoV risk calculator has had had 1.3 million page views from 636K users across the world. The risk calculator was featured in The British Heart Foundation’s article ‘How to calculate your personal coronavirus risk’.
Whilst currently focused on the excess risk from COVID-19, the research team has ambitions to develop the tool to allow patients to understand their risk information across a wider number of health conditions.
Meet our Phenomics for People patient and public advisory group
As well as: