A culture change is underway – what’s your role?
#IrishMed tweet chat, 10pm GMT, Wed 17th Feb
Activities in the area of health research and healthcare, are frequently focused on improving the lives of patients. However, all too often, patients and their care-givers are not consulted on how exactly they would like their lives to be improved and not asked for their valuable input.
Everyone is a patient at points in their lives – we all get that. Why then is the term ‘patients’, often used in such a way as if to refer to a group of ‘others’ who are not fully capable of knowing their own minds? While they may not have the medical training of healthcare professionals, patients have a lifetime’s knowledge of their own body and, in the case of rare or complex chronic conditions, often know more about their illness than clinicians. In short, they (and their care-givers) are experts in their own right.
Thankfully, there is increasing recognition of this unique expertise and the term ‘patient and public involvement’ (PPI) is working its way into the lexicon of the health community. We are at the early stages of a culture change which will involve including the patient voice in decision making, on everything from the direction research should take to decisions on what medications patients are provided access to. While this is to be celebrated, it is important to recognise that culture change doesn’t always come easily and there are many and significant challenges to over-come.
We’d love for you to join us for this #IrishMed tweet chat to discuss the role of PPI in all aspects of care and health research and in doing so, to consider what your role in the culture change might be. The questions we will ask during the chat are:
T1. How do we convey the value of #PPI to those who doubt?
T2. Should research funders and care providers insist on #PPI?
T3. Do patients have all the expertise they need to partake in #PPI or is training essential?
T4. Are there times when #PPI is not possible or useful?
Hopefully we can also persuade you to continue the discussions after the tweet chat on http://bit.ly/PPI_Blab