ERKNET Patient Communication Failure Continues

Yet another ERKNet Annual Meeting took place in Heidelberg , Germany in May 2019.
In over a month since it was held nothing has been communicated from it of relevance to aHUS patients. The alliance cannot establish whether any one representing the aHUS community was present let alone what was talked about or decided upon at it.
EURODIS is responsible for patient involvement in the EU European Reference Networks initiative of which ERKNet is a part but as the alliance has found from the beginning of ERKNet the E Patient Advisory Group set up ,whilst having great intentions (see below) ,  has not served the aHUS patient community well at all. The problem being the EPAGs failure to communicate with European aHUS patient organisations let alone aHUS patients. Particularly the EPAG for the TMA thematic Group within ERKNet of which aHUS is one disease ( see previous article to understand ERKNet’s structure click here).
Indeed  it has only been the alliance that has communicated anything to do with ERKNet of relevance to patients , not only in Europe but throughout the world. Whether on its website or in its social media .Although it is not an EPAG member of ERKNet it has been overtly supportive.
The alliance has:

  • Reported on the launch of ERKNet, albeit on its 1st anniversary when it found out,
  • Fed back  live on two of ERKNets educational webinars about aHUS
  • Reported another EPAG representative’s ( not TMA ) presentation  about ERKNet at Nijmegen
  • Followed and noted ERKNet’s Journal Watch relating to TMAs
  • Visited and reported on ERKNet expert centres
  • Retweeted and shared numerous ERKNet tweets about aHUS and TMA

The EPAG for TMA has communicated nothing , nor does it seek input.
This is not down to the clinical governance of ERKNet , EURORDIS is responsible for EPAGs.
According to the programme there were sessions about E PAGs , patient website  , patient involvement and work group for TMA. There was also a session on the new ERKNet Patient Registry
Recently the  alliance posted on Facebook news from the UK aHUS Expert Centre in Newcastle upon Tyne that one of its team , Dr Michael Malina,  gave a presentation at the ERKNet meeting about the variable patient access to  eculizumab throughout Europe. Something which has featured on the alliance pages for sometime , yet nothing about it has been said about by the TMA EPAG , not even on EURORDIS Rare Connect platform, nor the moribund FEDERG website.
aHUS patients  deserve better.
The ERN Project has a long future ahead with the promise of better outcomes for patients but if patient involvement  is to improve, EURORDIS must look at what it says will it do and what is actually being done , and address the gap.
Alone we are rare together we are strong ,but only if we work together.
*The role of ePAGS
Specifically, ePAGs and ePAG advocates:

  • Contribute to the ERN Board to provide the perspective of patients on all relevant aspects of the ERN strategy, policy & organisational processes
  • Promote and encourage a patient-centric approach in both delivery of clinical care, service improvement and strategic development & decision-making
  • Advocate for care that is patient-centred and respectful of patients’ rights and choice
  • Provide the patient perspective on the application of personal data rules, compliance of information consent & management of complaints
  • Ensure that processes to address all ethical issues and concerns for patients are in place, balancing patient and clinical needs appropriately
  • Advise on transparency in quality of care, safety standards, clinical outcomes & treatment options
  • Advise on overall planning, assessment and evaluation of ERN activities and initiatives
  • Monitor the performance of the ERN by reviewing quality indicators such as clinical outcomes of diagnosis and treatment
  • Develop an ePAG feedback and evaluation framework across all ERNs to provide patient experience feedback of ERN and healthcare providers’ activities
  • Monitor and evaluate the adoption of patient feedback by the ERN based on patient experience surveys prioritising the objectives, work plan and service improvement in the network on an annual basis
  • Contribute to the development and dissemination of patient information, policy, good practice, care pathways and guidelines
  • Contribute to research e.g. defining research areas important to patients and their families and disseminating research-related information
  • Identify expert centres to join the ERN as a full member or affiliated partner
  • Provide an evidence-based patient perspective on the needs of people living with a rare disease and ensure all rare diseases are considered and included in ERN discussions and activities
  • Produce annual ERN evaluation reports


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