EUPATI 2015 Workshop, 22 April 2015, DublinEUPATI TAKING OFF IN YOUR COUNTRY – An Interactive Workshop on Implementing

EUPATI in Your Country

Report from Break-Out Group 2

Make it work nationally (for EUPATI Countries where no ENP is set up yet)

The project is receiving support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.

Objective

To identify what steps NLTs need to take to get an ENP effectively established in their country before the end of 2015

What may be some of the considerations in setting up an ENP? What may be some of the obstacles? Finding the Drivers – the natural leaders

• They need a vision and be able to enthuse others and then people will follow

• e.g. Michael Griffiths to enable IPPOSI to be set up as a patient led organisation but with senior buy in from Heads of Medical Schools, Industry and PO and grew the development into a tripartite relationship

Finding the right champions in PO, academia and industry who can bring knowledge, resources – in kind people resources, infrastructures, contact base & access to influence spheres) • Academia – need to bring in more clinicans that can see benefits in

Clinical trials design from engaging with patients• Finding the right people in pharma – really challenging to navigate –

possible best to find at conferences or via EUPATI where some companies have their PPI champion identified and can tap into

Germany and Austrian perspective– Fear of engagement rebranding is needed ‘keep you enemies closer’ so start to break down the barriers of pharma • Pharma develops new medicines – we need them and we need to work on

transparency so can build bridges.

2. What would your ideal ENP look like? Who are the stakeholders you might need to reach out to?

Creating effective partnerships between patient organisation, academia, industry

Patient led ENP Other stakeholders:

– Identifying positive contacts with Pharma and academia– Media– Government funding agencies for endorsement of value of

EUPATI– Heads of Medical Schools clinicians , academics– [In Germany Health insurers would be needed, health

providers]In UK – Chief Medical Officer Dame Sally Davis championed Government funding embracing PPI in all grant applications – this spread down to other charity and research councils and then ensure impact of research for maximising patient benefit

2. Cont…What would your ideal ENP look like? Who are the stakeholders you might need to reach out to?

• Highly inclusive• Governance code is in place (Laura Kavanagh can disseminate to your

NLT ENP)• Strong involvement of PO that they want PPI in research• Creation of an effective Scientific Board – “Academy of Patients” (maybe

linked to EU Patient Forum)• Excellent effective communication channels• Progressive – aimed to raise standards, equip PO to have a stronger

voice through education in therapeutic innovation (medicines development)

• Division of workloads as move from NLT to ENP using extended team of enthusiasts

• National endorsement (e.g. ISPOR in Italy recognising important role of EUPATI) National Medicines Agency, Health ministry engaging

3. Developing strategic links growing country networks. How will you reach stakeholders and convince them to sign up?

• Belief in the vision and find others that share same belief

• Need to meet up and fire of each other to keep enthusiasm for shared vision

• Provides a real practical benefit for patients (e.g. inhaled insulin was a huge device and would never be used need patients in there to co-design, would have saved pharma money on a poorly designed technology)

• INVOLVE website has some great examples of PPI impact that can be used to convince why it is important

4. Why should we join up join forces? How can we share the value/benefits of PPP with others?

Knowledge transfer & sharing of best practice to enable informed decision making in therapeutic development and treatment decision making “Patients know best”  

Making opportunities for improved medicines development  Being part of a paradigm shift of having patients actively involved in

therapeutic innovation research and development Ensuring patient benefits are central to research rationale   

5. What can EUPATI offer?What are the opportunities for training and access to resources for PPI

Opportunities to embed in undergraduate health professional learning so training early of the benefits of hearing the patient voice

Providing students access to present their research to patient Forums for feedback before they start

Patients coming into discuss what it is like to live with conditions to medical students and they also bring in pharma and researchers to discuss their research at same events

6. What type of alliances can ENPs make? Why is an ENP mechanism useful?

“Stronger together” approach Opportunities to advance international research Joint venture opportunities - Signposting via EUPATI ENP to patient

experts trained - ambassadors acting as skilled partners with industry and academia to ensure patient benefits of research are maximised

7. How can we convince others of the added value of EUPATI? Where can we speak about EUPATI?

For PO - Through ensuring access to training that all patient organisations want

For Academics and clinicans - Ensuring raised knowledge and awareness of PPI contributors

Suggested New terminology

Instead of PPI Representatives PPI Contributors

Overcomes barriers of lay persons and expert persons