Making EUPATI work now and in the future – break-out messages
Making it work nationally in EUPATI countries where a National Network is set up
“We had a very vibrant discussion,” said rapporteur Karin Holm, Patient Advocate for Cancer Research and Treatment (PARCT), Switzerland. The group looked at some of the benefits of having a National network and found it could be a central point for national policy and regulatory organisations to ask questions.
Networks are also a way to bring a diverse group of national partners together, to speak with one voice, to “connect the dots between organisations”. And the existence of a national network itself eases the path to multisectorial cooperation between academia, government and pharma. Other benefits include having one group to address key issues across the nation, and getting all the funders around one table.
Who are some of the national partners? What might their contribution be? The first answer was “all interested patients” – quite a task with typically thousands of patient groups in a country. The group considered the need to reach out to academic and research groups, and to clinical trial organisations. The list of partners went on: ministries of health, other national institutions and regulators; healthcare professional organisations; ethics committees at hospitals and within geographic jurisdictions; pharma associations and individual companies; and the media.
There were many questions about what the strategic priorities might be, but there were also suggestions. Holm reported that the group placed a high priority on passing on the knowledge gained in patient education training to a broader audience. There was much discussion about how to do that, bringing together the different players and communicating the existence of new tools.
What does success look like? The group listed five clear signs of success:
- making people aware of each other;
- getting all the partners on board (in whatever way works locally);
- securing sustainable funding;
- developing new ways of thinking, and opening up new avenues for engagement;
- and making your network the “go to” organisation for patient engagement.
The group also tried to identify the characteristics that all National Networks will have in common:
- Each builds relationships, strategic partnerships and networks.
- Each has to decide its main role: is it to be a router, a doer, a sign-poster or a portal? (It was suggested that case studies of those networks that have made greatest progress might be very helpful to others.)
- Networks also recognise that each partner has its own partners and affiliates – so use the multiplier effect to spread the word.
- Each Network will have some country-specific issues to address.
- And, finally, the networking created also generates an informal forum to share ideas and materials.
Making it work in countries where no National Network has been established
As rapporteur Sue Pavitt from the University of Leeds, United Kingdom explained, this breakout group set out to identify the steps National Liaison Teams need to take to get a National Network effectively established in their country. (And in the words of session chair Jan Geissler, they did so, producing “almost a cookbook for how to set up a EUPATI National Network”.)
First, what are the considerations in setting up a National Network? And what are the obstacles? As Pavitt reported, the group spent most of the time on the obstacles. It took from the Italian example the need to find the “drivers”, people with vision to enthuse others, such as Ireland’s Michael Griffiths, from IPPOSI. The challenge – and it is a challenge – is to find the right champions in patient organisations, academia and industry. There was also talk of bringing clinicians on board, not just academics.
If that is difficult, it is even harder to navigate the large companies to find the right people. One short cut might be to tap into those companies already engaged with EUPATI. The group spent time talking about Germany and Austria, where there is “quite a lot of angst” over engaging with pharma. The moral: as you start to break down barriers, “keep your antagonists nearby”.
Moving on to what the ideal Network would look like and who the stakeholders would be, the group agreed that it had to be patient-led. Then it must create effective partnerships with other stakeholders, such as pharma, academia and the media. One message is that funding matters: once government agencies in the United Kingdom endorsed the value of patient and public involvement in their funding schemes, the concept “snowballed” from the Department of Health to research councils and charities. Perhaps, people thought, inserting requirements for patient and public involvement into grant funding schemes might be an most effective way of shifting cultural attitudes (in Germany and Austria) towards working with pharma.
The ideal National Network needs to be highly inclusive. It would have a governance code, strong involvement of patient organisations with the desire to involve patients and the public in research, an effective scientific board, excellent communications, a commitment to maintaining high standards, and a progressive division of labour. National endorsement from, for example, health ministers would also help.
How do you reach key stakeholders and convince them to sign up to the Network? It starts with believing in the vision and finding others who share that. You need to meet up and fire off each other to keep your enthusiasm, said Pavitt. To convince others, you need to provide evidence of a real practical benefit for patients (there’s certainly a lot of evidence of the costs of poor marketing decisions not involving patients). One “huge resource” on the impact of patient and public involvement which can be used to convince others is the INVOLVE website in the United Kingdom.
So why should we join forces? Above all, because knowledge transfer and the sharing of best practice enable informed treatments. “Patients know best. That’s something we should take as a slogan to move forward,” said Pavitt. Joining up also creates opportunities for improved medicines development, and enables us to become part of the paradigm shift where patients are actively involved in research and patient benefits are central to the research rationale.
What can EUPATI offer? Pavitt said that the earlier report from Group 1 had covered that well. But her group looked at several opportunities
- for embedding patient-driven ideals and experience into undergraduate healthcare professional courses;
- for providing students access to present their research to patient forums for feedback before they start;
- and for introducing the idea of patients coming in to medical schools to discuss with students about what it is like to live with conditions.
In terms of the difference a National Network can make, the group singled out the concept of “stronger together”, along with greater opportunities to advance international research and more opportunities for joint ventures.
The group also discussed briefly how to convince others of the added value of patient collaboration, concluding that patient organisations will need to be shown that EUPATI can ensure access to the training that they want. Academics and clinicians, on the other hand, need to be made more aware of the benefits of patient and public involvement – in the United Kingdom, this involvement can be incorporated into grant proposals, and research funding reviewers know that grant panel members know when a proposal is merely tokenistic.
Finally, the group suggested some new terminology. Instead of patient or public representatives, we should talk about patient or public contributors. “That would avoid some of the barriers we see in terms of lay persons and expert persons,” said Pavitt. “Everyone has a role where to contribute.”
Making it work nationally in non-EUPATI countries
As session chair and Director Jan Geissler reminded the workshop, EUPATI has had to concentrate on a limited number of countries. But, he said, the question of how to support countries not part of its funding is “very important”. It is also complex.
Rapporteur Ingrid Klingmann from the European Forum for Good Clinical Practice, Belgium, related that the workshop found it difficult to come to a clear picture of what to do, faced with the whole of Europe minus the EUPATI 12 – so another 16 countries plus those European countries not in the European Union – with different backgrounds and starting positions. Indeed, 17 countries were represented in the break-out– including Turkey and the US. “But we did what we could,” she said.
We know that there are proactive supporters driving patient involvement in non-EUPATI countries, and there have already been discussions internally on how to facilitate and utilise this enthusiasm. The group set out to identify which steps individual supporters of EUPATI can take and what support is available.
It began with a simple question: Why do you want to install EUPATI in your country? The main answer can be summed up in one word: information. Patients need more correct information, and they need to know where to find it. That includes information about patients’ roles both as participants and advisers. But crucially, the information that EUPATI provides must be “absolutely credible”, reported Klingmann. In this context, the national organisations have to be responsible for managing information into their own countries “in a reliable and professional way”.
Other drivers included a perceived need for a “common language” to enable communication between the stakeholder groups – and we are or could be that joint language. Break-out participants also mentioned a lack of understanding about the relevance of treatment instructions.
Patients want more respect from other stakeholder groups for themselves and their experience, and it was felt that National Networks could help in this. But there was a warning, too: empowerment does not appear one day – it takes time, and stakeholder have to work to achieve it.
When it came to how EUPATI could support their activities, the group came up with a number of practical suggestions, most of which seemed easy to organise. Letters of intent or introduction could help with approaches to academia (“of course”, said Klingmann, “just ask us”). They also wanted speakers from EUPATI’s core team at their national events (“definitely, we have presentations available”). An important aid would be support in involving competent authorities and bodies such ministries and health technology assessment agencies (“we have experience doing this”).
Another (repeated) topic was that the Research Toolbox should be available “earlier rather than later”.
Beyond that, the group said that confusion around what being “representative” meant causes problems. “We haven’t found an easy answer to that,” admitted Klingmann. People also wanted clarification of the rules on conflict of interest when working with industry on an IMI project.
The break-out group mentioned a raft of obstacles to implementing patient engagement at a national level, from patients not being seen as influential in their own country to substantial gaps between patients and industry. Another issue was how to organise translations that meet quality requirements, especially if there is no budget allocated for them. And without EUPATI funding, the overall issue of how to get money was inescapable. Others cited the importance of an organisation that can sign a contract with industry and open a bank account.
At this point, EUPATI can offer training of more knowledgable patient representatives and establishing the concept of a “patient key opinion leader”. On a more positive note, non-EUPATI countries could share experience and learn from each other about how to collaborate effectively with the competent authorities, and how to gain public funding. Another interesting suggestion was to “buddy up” with a EUPATI country in a twinning arrangement.
Keeping it going over the longer term; how to make patient education a long-lasting success
Now is the time to look at EUPATI’s long-term future, said rapporteur Per Spindler from Biopeople, University of Copenhagen, Denmark. He reported that the break-out group had looked at what he called the micro and macro dimensions: the micro being the country level, the macro being the project as a whole.
The approach they took was to draw on national experiences and examples of best practice. At the micro level, that suggests the importance not just of engagement with local stakeholders, but also of a formal structure for doing it. Break-out members suggested that a “concept paper” could be useful in terms of driving the National Network, and could also be used for promotion and funding. They also stressed the importance of transparency, and the role events can play. Communication was also seen as a key part of activities and events. Young people need to be included in communication, and we should use our partners’ communications and social media to widen our reach.
When it came to the macro level, “the voice from the group was that EUPATI provides access to information and tools,” said Spindler. As other break-out groups had also concluded, credibility is crucial – in the project as a whole, in its training and in its training material. Impact can be gained by linking patient education into European decision-making. Collaboration will be increasingly important as EUPATI evolves. In any future system, patient leadership must be seen as a legitimate voice in decision-making.
But the micro and macro worlds are not totally separate. Spindler finished his report with a reminder that activities at the national level facilitate impact at the European level.