COVID-19: Public and patient involvement, now more than ever

In an open letter, researchers and PPI contributors from NUI Galway, argue that PPI in Research is important, now more than ever. It is essential that the research to find solutions is shaped by all who will be impacted: the public and the patient must be central contributors and their voice must be hear.

Rare Disease patient experiences

Rare Diseases Ireland (RDI) conducted a survey to understand the experiences of people living with a rare disease in Ireland during the COVID-19 pandemic. The survey results are available on the RDI website – This survey may be re-run in the months ahead as RDI monitor the situation on an on-going basis.

European patient perspectives on COVID19 pandemic.

Throughout the COVID19 pandemic, the European Patients Forum has been asking  patients with chronic health conditions how they have been affected by the COVID-19 outbreak. The have collated some of the responses HERE. 

Patient testimonies from the Access to Medicines Conference April 7,2020

On the 7th April, Access to Medicines Ireland, held an online conference “Adapting to COVID-19: Defending the Public Interest in Vaccine and Medical Development.” The conference included contributions from patients who were asked to demonstrate the reality and impact of the current COVID19 crisis on people living with chronic health conditions and to offer their perspective on  ethical concerns when responding to a pandemic. They also disussed the real impact of obstacles to accessing medicines and how it affects them personally. Kay Curtin (IPPOSI Patient Graduate) and Jacqui Browne (EUPATI graduate) contributed to the conference  and you can view their testimonies here 

Now is the Time to Protect Patients and Safeguard Access to Care

The European Patients’ Forum (EPF) is an umbrella membership-based organisation that works with patients’ groups in public health and health advocacy across Europe. Their members represent specific chronic disease groups at EU level or are national coalitions of patients. Their statement on the 8th April, 2020 highlights the fact that treatment delay and discontinuation are very real concerns for certain groups of patients such as cancer patients. They call for clarity on what is happening in terms of access to ongoing treatments, therapies and procedures. This statement reinforces its earlier statement calling on Member States to put in place effective strategies to protect the health of chronic patients. EPF recommends authorities work with their country’s patient organisations to identify best possible solutions and  ensure effective flow of information. Read the full statement HERE 

The views of patients and the public should be included in policy responses to covid-19

On the 8th April EURORDIS, The Voice of Rare Disease Patients in Europe, wrote an open letter to policy makers which outlined their recommendations for protecting  people living with a rare disease during the COVID-19 pandemic. Read their letter HERE 

The views of patients and the public should be included in policy responses to covid-19

On the 30th March, Kaisa Immonen, Director of Policy at the European Patients’ Forum, publised an article in the British Medical Journal where she cautioned that in the rush to introduce new policies, including priority setting for acute care during the COVID19 pandemic,  patient and public consultation has largely been bypassed.  The article also discusses how the pandemic was highlighting gaps in healthcare that patients and carers had been highlighting for years. Read the article HERE. 

Statement from the Irish Platform for Patient Organisations, Science and Industry – Monday 16th March 2020

The Irish Platform for Patients, Science and Industry (IPPOSI) calls on the HSE and GPs to prioritise COVID-19 testing for patients with underlying conditions and urges the public not to flood new testing centres unnecessarily. Full statement here