AGORA | Report on the 9th annual International Experience Exchange for Patient Organizations
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Report on the 9th annual International Experience Exchange for Patient Organizations

15 – 16 March 2017, Melia Castilla Hotel, Madrid, Spain

The 9th annual International Experience Exchange for Patient Organizations was held from the 15-16 March 2017, in Madrid, where Agora participated with its Chair Mrs Souzi Makri. The agenda delved into some of the most important aspects of the overarching theme of “Amplifying the patient Voice”. This year the meeting welcomed approximately 300 participants from 240 patient organizations from 56 countries worldwide while covering 20 therapy areas.

This Conference is held annually by Roche Ltd. in different regions with focus on different aspects of patient organizations and with main aim to bring together professional patient organizations and conversant lecturers from around the world in order to share experiences and discuss challenges faced.

This year, the programme of the meeting was extended in order to include 7 ancillary meetings and more specifically:

  • HTA Training workshop
  • Early Breast Cancer breakfast meeting
  • Real World Data (RWD): How can patients groups contribute in a meaningful way?
  • Evidence into Action: Using policy to improve outcomes in MS
  • Geographic Atrophy workshop
  • Rare Diseases workshop
  • Rheumatoid Arthritis meeting

Agora’s Chair with some representatives from Agora’s members attended on 17th of March the Rheumatoid Arthritis meeting as well as the very interesting HTA training Workshop on 14th of March under the title “Incorporating the patient voice into health technology assessment”. The main objectives of this workshop were to provide patient organisations with an understanding of health technology assessment as well as to explore how patient groups can contribute to the decision-making by providing patient evidence to the process.

On the first day of the meeting, Irmi Gallmeir, Senior International Health Policy Leader of Roche, welcomed the participants on behalf of the organizers and then Mary Baker, Immediate Past President of European Brain Council and Chair of IEEPO 2017 made an opening speech where she explained why the patient voice is needed now more than ever especially in a changing healthcare environment with the challenges of the ageing population, precision medicine and big data being present. She concluded by highlighting that it is vital patients to be involved and represented in the decisions that affect their future.

Jean Mossman, Health Consultant and Co-Chair of IEEPO 2017, took after the floor in order to present the results on a key-pad voting poll that took place among the participants and showed that partnerships are empowering patient’s voice in many countries. Subsequently, a panel discussion followed on the question “Why isn’t the patient voice embedded in all healthcare decisions?”. Mayra Galindo, General Manager of the Mexican Association for the Fight against Cancer, was the first panellist who dealt with this question and she explained that this happens because in many countries, healthcare professionals are overvalued whereas patients are subordinate. In such countries, patients need to be educated and empowered to speak up. Alistair Kent, Director of the Genetic Alliance UK, presented his point of view by saying that this happens due to the fact that patients are perceived as too emotional and codes-of-conduct and laws can be preventative. Patient’s organisations need to be assertive to convince stakeholders that their contribution is valuable. For the last panellist, Kin-Ping Tsang, Vice Chairman of Hong Kong Patients’ Voices, patient voice is not embedded in all healthcare decisions because decision makers don’t want to change their working format and because patient organisations still lack the skills. He added that more investment in capacity building is needed to nurture and train more patient leaders. Module 1 ended with John Bowis, International Health Advisor and Former UK Health Minister, who presented the politician’s perspective and referred to the importance of partnerships and persuasion on the influence of health policy.

Right after, Module 2 took place on the topic of “Understanding the environment” which was divided into two Tracks. Track 1 focused on “Health policy” and was introduced by Cathy Scheepers, Programme Officer and Project Leader of Max Foundation, who spoke about the role and the importance of health policy in improving patient care. She stated that working out where to begin is the key and it is important to seek ways to bring the patient voice into the conversation in order to evolve healthcare. The next speaker, Jane Barrat, Secretary General of International Federation on Ageing, in her presentation on “How do patient groups move their organisations towards influencing policy?” advised patient groups to think strategically and target the areas in which they can make the greatest impact as well as to identify the barriers which need to be addressed and to consider solutions. Track 1 ended with the presentation of Maria Galvez Sierra, General Manager of Patient Organisation Platform, who focused on how patient groups can contribute to health policy development and implementation. She conveyed to the participants the message that many voices communicating one message amplifies the patient voice and she advised them to find their common goals and work together towards their achievement. The main conclusion of this Track was that policy work has a crucial impact on patient care and patient organisations which need to work together in order to influence governments in a united way.

Track 2 focused on “R&D and regulatory processes” where Surendra Gokhale, Head of International Clinical Trial Regulatory Management of Roche in his presentation on the “Overview of drug development life cycle and regulatory environment” stated that innovation is not straightforward but the importance of patient input in clinical development is recognised. Mr Gokhale explained that it takes approximately 10-15 years to bring a new medicine to patients and this can involve 30.000 people. He mentioned that research and development happens in phases, starting with the screening of thousands of molecules and ending with clinical trials involving patients. Once an efficacy benefit has been proven, data are submitted to regulators. Once regulators approve the medicine, national cost and reimbursement discussions may begin. He highlighted that in Roche they rely on real world, patient-reported data to inform their drug development programmes and that they are always looking for ways to involve patients earlier in the process so that they can design medicines that truly meet patients’ needs

Then, David Haerry, Treatment Writer and Conference Reporter, took the floor to speak about “Patient voice in regulatory process and conflict of interest- a European approach” where he stated that patient involvement in European drug regulation is growing, slowly but surely. Mr Haerry added that the number of documented interactions between EMA and patients has increased by 360% in the last eight years and patients can work with EMA for instance as consultants, board members and scientific advocates. He concluded by saying that patient input at the EMA is mature, well-structured and thorough and a robust conflict of interest policy in place ensures impartiality.

Module 3 concentrated on the topic of evidence supporting the patient voice and it was divided into two Tracks. The first track focused on “Health Policy” and the second one on “R&D and regulatory processes”. The main outcome from the exchange of views that took place in the first track was that robust data collection and relevant analysis and presentation of this data are the key for effective lobbying”. The first speaker, Amanda Bok, Chief Executive Officer of European Haemophilia Consortium, made a presentation on “Evidence supporting the patient voice: The haemophilia experience” where she pointed out that patient collected data can influence concrete policies in a relatively short amount of time. Data collection can drive consensus and be used to evolve solutions”. Next speaker, Marcelle Maderlos, Founder-Volunteer President of Pink Ribbon Foundation, in her presentation under the topic “Evidence to support policy change” highlighted that investing in data collection can uncover important gaps in healthcare which can then be used together with the media in order to raise awareness and open the door to discussions with policy-makers. Liam Galvin, Voluntary Elected General Secretary of the European Idiopathic Pulmonary Fibrosis and Related Disorders Federation, concluded the first track by noting that turning data into evidence allows effective lobbying. Data can be used alongside personal stories and it must be robust, referenced, transparent, factual and relevant.

The key message from the Track 2 was that getting the patient voice heard in R&D and regulatory processes takes evidence as it was reiterated by the first speaker, Francoise Rouault, International Scientific Affairs Manager of AFM-Téléthon, where in her speech on “Patient voice: Collecting and reporting evidence to R&D and regulatory agencies” outlined that it is important to generate qualitative and quantitative data through focus groups, panel, discussions, interviews and surveys and to publish the results in order to strengthen patients’ credibility. The second speaker, Jan Geisser, Founder and Managing Director of Patvocates, spoke about the issue of evidence-based advocacy and he pointed out that stories are a vey powerful tool but it is even more powerful if anecdotes can be underlined with evidence thus stressing that evidence based advocacy can really change practice.

Module 4 under the title “Skills to support amplifying the patient voice” was the closing one of the first day and it delivered the message that multiple stakeholders may be engaged to help patients to spread their message. Heather Allan, Chief Executive Officer of Lung Foundation Australia opened the floor with her presentation on “Developing key messages” and she mentioned that positive policy reforms are often prevented by stigma. She stressed that it is important to change attitudes by developing clear messaging and empowering and equipping patients to speak out, using their own stories as vehicles. The second speaker, Emilio de Benito, Journalist of El País, attempted to shed light on the complicated relationship between patients and media by suggesting that it is necessary to collaborate with journalists to find stories of mutual interest and that in order to get coverage it is important to have a news hook such as new data or changing dynamics whereas campaign messages are not enough. Louis DeGennaror, President and Chief Executive Officer of the Leukemia & Lymphoma Society, concluded Module 4 by stating that it is essential to mobilise patient’s organisations to lobby for change and to target physicians with letters and visits. Patient’s organisations must not give up until their message has been heard.

Severin Schwan, Chief Executive Officer of F. Hoffmann-La Roche Ltd and Mary Baker, Immediate Past President of European Brain Council and Chair of IEEPO 2017 facilitated Day 2 of the meeting with an open floor of questions and answers. Various important topics were raised such as:

  • Data aggregation: It is important to standardise real world data collection across countries. This is extremely critical and patient’s organisations must be encouraged to get engaged in this topic.
  • Data privacy: It must be ensured that there is a strong regulatory framework in place to prevent misuse of patient data, for example by insurance companies.
  • Clinical trial design: Patient engagement in clinical development is increasing. In rare diseases for example, patients are consulted at all stages-from the very first research to reimbursement. Only patients can verify which outcomes are truly meaningful
  • R&D spends: Medicines are priced according to the value they provide, not in terms of R&D spends. Pricing by cost would be the wrong incentive because true innovation is a risky business.
  • Pricing: Prices differentiate according to the wealth or the “purchasing power” of a country. This has been proved successful in many parts of the world but it is not possible in Europe due to the parallel export agreements. Efforts are put overcome this obstacle.
  • Access: Access is a very broad issue and price is one component. In some countries, even if you are provided with a drug for free, patients still wouldn’t be able to access it because the infrastructure isn’t there.
  • Biosimilars: Biologic medicines made by different manufactures can never be identical which is why robust regulation is so important.

Module 5 kicked-off with the presentation of Dietmar Berger, Senior Vice President, Global Head/Clinical Haematology/Oncology,Product Development Roche/Genentech, on “The right medicine to the right patient at the right time” where he pointed out that there is a limited number of genes, proteins and pathways, and we will, at one point, be able to know exactly what’s going on inside a tumour. Big data and genomic sequencing will help us to keep developing cutting-edge, highly personalised therapies that block the drivers of tumour growth and recruit the body’s immune system to kill cancer.

In the last Module under the topic “Bringing it all together: Amplifying the patient voice” the key message was that an ideal advocacy framework is based on partnerships. The first speaker of this Module, Tamas Bereczky, Communications Officer of European AIDS Treatment Group, mentioned that a forum between the HIV/AIDS community and the pharma industry is enabling balanced, fair patient input into clinical research while Durhane Wong-Rieger, President and Chief Executive Officer of Canadian Organization for Rare Disorders/Consumer Advocate Network”  presented her point of view by saying that successful partnerships can come in many forms: networks, coalitions, alliances and even joint work with competitors. Next speaker Chih- Liang Yaung, Chairman of Taiwan Alliance of Patients’ Organization, added that patient rights come from the core of human rights: The right to know, participate and choose – alone we are powerless, together we are strong” while the last speaker Ms Nirmala Bhoo-Pathy, Associate Professor of University Of Malaya, noticed that “That in order to change the out-dated view that patients can only contribute to anecdotal evidence it is necessary to partner with other groups and collect large data sets that can help to drive policy changes”.

The meeting ended with the presentation of the final remarks and conclusions by Ms Baker, Chair of IEEPO 2017 and the organisers thanked participants for their presence.

The key messages of this meeting can be summarized as following:

  • Evidence is everything. Collect robust data to support your argument and amplify your voice
  • Approach politicians with solutions, not with problems
  • Form partnerships so that your voice is stronger and more unified
  • Rely to multiple stakeholders to ensure your voice is heard – patient members, media and political support
  • Your data can make a huge difference to clinical research. Get educated and involved in the current discussions
  • No one knows your disease better than you do. Be assertive and show the value of your input in healthcare decisions
  • There are many ethical discussions to be held and frameworks to be built to enable greater patient involvement in clinical development. Help to drive this
  • We must all work together to find sustainable access solutions that protect the future of innovation


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