EFPIA's inaugural Health Collaboration Summit, held in Brussels on 28-29 October and attended by some 250 delegates highlighted the value of co-operation between all healthcare stakeholders to improve the development of therapies and assure swift and equitable access across Europe.
The opening messages at the Summit were delivered by EFPIA Director General Richard Bergström and Nicola Bedlington, Secretary General of the European Patients Forum (EPF).
Bergström talked about the need for a joint stakeholder definition of what constitutes good outcomes and the need for industry to intensify its collaboration with patients so that medicines can be targeted to their needs more effectively. “Collaboration has always been part of the genetic setup of our industry, but it has evolved,” he said. Bergström also spoke about the success of the Innovative Medicines Initiative but warned that innovation was irrelevant if it could not be accessed by patients.
Bedlington spoke of a new climate of engagement between patients, industry and other healthcare stakeholders, adding that patient organisations can take the role of “critical friend” to other stakeholders in healthcare. She highlighted the benefits of the European Patients' Academy on Therapeutic Innovation (EUPATI) and called for a follow-on initiative. “EUPATI has allowed us to think about how to engage patients for the medicines lifecycle,” she suggested.
In a session moderated by Maggie Alexander, Chief Executive of the European MS Platform, Magda Kalata, Yasemin Sener, Clara Zachmann, Diana Kanecka, Katrina Murray, representatives from the European Health Parliament – a platform for 80 young professionals looking to re-invigorate the EU healthcare system – discussed solutions to combat spiralling healthcare costs and improving access to therapies. In this context, they looked at the potential of: telemedicine; a proactive vaccination plan; a single digital market for healthcare; developing a European Access Observatory to assess access annually; early diagnosis; and EU roles in screening programmes and cross-border diseases outbreaks.
Moderated by Novartis's Head of Corporate Strategy and Healthcare Systems Paul van Arkel, the next session was dedicated to “Delivering better outcomes and patient-centered care”. Speaking on the topic of dementia, Irene Oldfather, Director, Health and Social Care Alliance Scotland, said that working with EUPATI offered an opportunity for a paradigm shift in terms of collaboration, which would benefit patients. Juan Jover, Professor of Medicine in Madrid and Head of the Fit for Work Initiative, suggested that cross-financing between health and social care systems might be good for sustainability and offer patients improved access.
Whilst expressing concern about Europe's cautious approach to data sharing, Matic Meglic, Strategy and Business Model Innovation Director Integrated Health Solutions, Medtronic, said that, nevertheless, Europe needed to have registries in place to offer value-based healthcare and to improve significantly its ability to share data across countries. Christoph Thalheim, Vice CEO and Director External Affairs at European Multiple Sclerosis Platform (EUReMS), agreed, but added that Europe needed to be capable of monitoring the “right patient, right treatment, right time” proposed solution by setting up disease-specific registry networks.
Stephan Korte, Head of the Novartis IMI Office, talked about the significant contribution to research and healthcare solutions gained through IMI. He underscored the absolute necessity of having anonymised patient data available for research purposes.
The third session, in the afternoon, focused on “Working together towards sustainability”. Stanimir Hasurdjiev, EPF, and Clara Zachmann, Ethics & Policy Manager EGA, updated delegates about progress made since the Vilnius Declaration of 2013 – which set out efforts to protect European health systems – and the Riga Conference this year. Hasurdjiev also explained about the patient access partnership (PACT) that was inspired by the Vilnius Declaration and announced a joint MEP Interest Group of Access to Healthcare and PACT debate set for 17 November.
On sustainability and innovation in the field of CNS, Frédéric Destrebecq Executive Director European Brain Council, called for increased public investment as the private sector was losing interest in the area.
Martin van der Graaff Secretary, Scientific Advisory Board (WAR) National Healthcare Institute, meanwhile, suggested that sustainability in healthcare was impossible without shared responsibility. He added that accelerated uptake could not be achieved without accelerated exit options and that in order to measure outcomes, “we must make sure that we actually can measure them”.
The keynote address was offered by EFPIA President and Novartis CEO Joe Jimenez. He emphasised the need to move from the current transactions-based approach to healthcare, to an outcomesbased model – which was clearly in the interests of patients. Jimenez also stressed that patient groups must be engaged in defining the outcomes that really matter to them.
He highlighted the value of real world data in order to better understand what outcomes are being achieved and which are being missed. Jimenez outlined the challenges to the outcomes programme in Europe – data privacy; data access; and data analytics – and called on stakeholders to engage in the data privacy debate, saying that this had to be resolved in order that future health improvement enjoyed a solid foundation on real world evidence.
This year’s Health Collaboration Summit featured the inaugural Health Collaboration Award designed to showcase and share best practice in collaborative projects between patient organisations, healthcare systems and industry. The Portugal-based COGWEB Network won the Award, with Know Your Pulse from the UK claiming the runner-up prize.
Day 2 of the HCS opened with a series of presentations on transparency in a session moderated by Eric Racine, Vice President & Head, Global Patient Advocacy, Sanofi. Andy Powrie-Smith, Communications Director at EFPIA discussed the need to meet the expectations of society in the critical area of transparency, he welcomed #AllTrial's drive to bring clinical trial transparency to the fore and emphasised that the pharmaceutical industry was committed to this, providing patient anonymity is guaranteed. Powrie-Smith went on to outline how industry will begin publicly disclosing payments to health professionals bringing greater transparency to this already well-regulated and vital relationship.
Jakub Dvořáček, Executive Director, AIFP pointed out that while the pharmaceutical industry had the support of the Czech pharma market in delivering the public disclosure of value transfers to healthcare professionals, 60% of Czech HCPs are unlikely to give their consent to the data being published. Mieke Goossens, Legal Counsel- Belgium, pharma.be, said that experience of disclosure in Belgium showed that effective communication was a key element to securing success.
Ilaria Passarani Head of the Food and Health Department, BEUC, The European Consumer Organisation, stressed that where disclosure was concerned, it was important to establish a level playing field in all EU countries. She noted that transparency should always be the default option and that transparency in pharma was essential to build patient trust. Brennan Jacoby, Philosopher, suggested that being transparent is not necessarily the same as being trustworthy and therefore that people who perpetually distrust the pharmaceutical industry may not buy into the disclosure effort.
Moderated by David Haerry, European Aids Treatment Group (EATG), the final session of the HCS took a long, hard look at “Best practice in industry-patient relationships”. Donna Altenpohl, Vice President of Communications & Government Affairs, GSK Vaccines, underscored that industry had to weed out isolated examples of bad behaviour and reinforce value of innovation. Effective access could only be gained through payer commitment, she said, adding: “Innovation is only innovation where you have affordable access to it.” She made the case for enforceable codes of conduct and relevant patient-industry relationships. Tim Windle, Public Affairs Manager, ABPI said that it was important for industry to focus on what brings value to the patient, noting that patient-centricity and profit should not be at odds with each other.
Audrey Craven, Past President, EFNA pointed out that one way for patients to shape relationship with industry would be by speaking clearly with one voice. She called on patients to set the agenda, rather than follow funding, as a means of emphasising their integrity. Mathieu Boudes, Operations and Projects Manager EURORDIS, similarly noted that, to have effective patient engagement, an empowered patient was key. Making the industry-patient relationship public in all details, represented a key action to building trust, he added.
Danish journalist Steffen Bang Nielsen, Dagens Medicin, noted that the pharma industry was perhaps the most regulated industry in the world. He did, though hypothesise that it would be better if the industry could focus more on who actually was gaining from specific aspects of collaboration.
The HCS 2015 was closed by Nicola Bedlington, Secretary General, EPF, who noted the urgent need for all stakeholders to enter into collaboration to address the very real challenges facing Europe's health systems today. She emphasised the need to focus on better outcomes, defined in partnership with patients, to promote sustainability and increased access. Bedlington said that these would be unachievable without shared responsibility, but at the same time there must be a level playing field between member states.