PED: Turning the patient voice into a dataset

Get ready to learn a new word: ‘spetspatient’. Coined by Dr. Sara Riggare, a patient researcher in health informatics with the Participatory eHealth& Health Data Research Group at Uppsala University, roughly translated it means ‘lead patient’. It ’s a term we may want to get used to as the industry comes to see the value, and increasingly the imperative, of reliably capturing what it’s like for patients to experience a condition, to live with it day to day and to treat it.There is a growing recognition of the value of using the patient voice as a dataset in this way, says Riggare. “I see the start of a new way of thinking. Traditionally patients have been seen as helpless and lacking knowledge, and can only generate data under the supervision of an HCP or researcher.”Patients can now become key opinion leaders (KOLs) who can work with pharma companies to identify and solve problems, she adds. “Anyone in pharma who wants to find a new solution should find the spetspatient and work with us. We can help with a lot of things.”From collaborator to co-authorPerhaps the ultimate iteration of this trend and the most potent expression of the spetspatient concept is patients becoming co-authors on papers that explore their experience of a disease.A Parkinson ’s sufferer since her early teens but undiagnosed until her 30s, Riggare has combined her experiences as a patient with her engineering skills to undertake a masters in health informatics, and attaining h...
Source: EyeForPharma - Category: Pharmaceuticals Authors: Source Type: news