2nd Colorectal Cancer Pat i e n t C o n f e r e n c e 2013 Your life, your responsibility 2nd Colorectal Cancer Patient Conference 5th & 6th July 2013 Barcelona Spain Executive Summary 15th Co-funded by the Health Programme of the European Union
Dear Friends and Colleagues When we held the first European Colorectal Cancer Patient Conference in 2011 (CCPC 2011) it was the realisation of a long-term ambition for many of us at EuropaColon. In many ways CCPC 2013 was even more rewarding. One thing that became clear from CCPC 2013 is that change is certainly still needed and we still have a long way to go before equality is achieved. In Europe incidence of colorectal cancer continues to increase every year. Despite recent improvements in cancer treatment survival differences between European countries are striking. Whilst so many advances have occurred in recent years whether in screening, treatment or other aspects of disease management, too many people do not have access to these advances and consequently too many people are still dying unnecessarily from colorectal cancer. This inequality must be addressed and stakeholders are starting to realise what we have been saying for a long time patients are absolutely integral to driving this change. Today patients and patient organisations are recognised as critical stakeholders in influencing improvements in the patient pathway. As a result of robust lobbying patients and patient groups are key to the design of clinical trials and can also play a significant role in opening up access to best treatments and care. CCPC 2013 aimed to empower patients to take responsibility for their disease and to become an even stronger voice in what is an extremely challenging landscape. I would like to thank all those who attended and provided such valuable contributions to help this vision become a reality. Jola Gore-Booth Founder / Director, EuropaColon EuropaColon Affiliates and Associates CCPC 2013 2 Executive Summary
Introduction On 5th and 6th July 2013, EuropaColon hosted the 2nd Colorectal Cancer Patient Conference (CCPC 2013) in Barcelona, Spain at the Hilton Diagonal Mar in conjunction with the 15th ESMO World Congress on Gastrointestinal Cancers. Approximately 220 delegates attended the event over two days and included cancer survivors and their families, clinical colorectal cancer experts and key opinion leaders across Europe and the world. The key note speakers included MEP Petru Luhan from the European People s Party in Romania, Europacolon s Medical Director Professor Eric Van Cutsem, Mrs Barbara Moss, a colorectal cancer survivor and Chair of the EuropaColon Expert Patient Advisory Group (EPAG) and Dr Ian Banks, President European Men s Health Forum. The key objective of CCPC 2013 was to sustain EuropaColon s efforts to combat the disease across Europe to engage, educate, inform and support colorectal cancer patients alongside all relevant stakeholders. The title of the Conference was Your life, your responsibility with the aim being to empower all stakeholders to take responsibility for their health and ensure compliance to their individual prescribed treatment pathway whilst being fully appraised of their rights within this process. The overall message emanating from the meeting was that patients must be involved in driving forward health policy without their involvement and views being considered the approach to tackling colorectal cancer in Europe will fail. Executive Summary 3
Outcomes: Key Considerations There were over 25 presentations from colorectal cancer experts and patient advocacy groups on a wide range of subjects from awareness, prevention and screening to national cancer plans, treatment adherence and personalised medicine. One of the highlights of the meeting came on the first day with a high level panel debate titled Personalised Medicine - Hype or Hope moderated by former MEP John Bowis. The panel included a patient, an oncologist, a payer/commissioner, a politician and a representative from the pharmaceutical industry. It was clear from the debate that health delivery and improved outcomes for patients are complex issues with often conflicting interests at stake. The panel agreed that change can only be achieved if a balance is reached between all the stakeholders, thus the views of all parties are relevant and need to contribute to the outcomes. Throughout all the sessions a focus was maintained on the role of the patient and the patient organisation to understand how positive impact could be made on public policy. Some of the key considerations from the conference are listed below: 1. Patients should be an equal and legitimate partner in their own colorectal cancer treatment and management decisions Nothing about me, without me - patients are becoming more engaged in their own treatment decisions and are starting to take more control of their own care Colorectal cancer patients often have to fight the system to achieve the management and care they need I am alive because I was proactive said Barbara Moss I had to fight bureaucracy as well as the disease. Some patients are able to take this fight on but many are unable to or do not know how patient organisations have a major role to play in empowering individuals with colorectal cancer 2. Colorectal cancer patients must be encouraged to drive change at a policy level Patient input is vital for meaningful policy making. They have an expertise that cannot be found anywhere else they have a major role in informing policy makers of the most urgent unmet needs and areas for future prioritisation Patient organisations can take the lead representing the patient voice in a single, unified and coherent way As well as being represented by local / national groups, patients can also campaign as individuals to their local MP/MEPs 3. A combined patient organisation voice is stronger and more effective A strong unified voice is vital - if cancer patient organisations work together across groups / countries etc. a single unified voice would be more likely to be heard by policy makers Politicians and policy makers have many different concerns beyond colorectal cancer and they don t have enough knowledge or expertise to make informed decisions. This is a major opportunity for patient organisations to provide a genuine service to policy makers and make the patient voice heard and understood 4 Executive Summary
4. We need to try and better define successful outcomes from a patient perspective Doctors and policy makers have a view on what constitutes successful outcomes of cancer management usually clinical outcomes e.g. overall survival or progression-free survival. However, the outcomes that are meaningful to patients may be completely different and vary at an individual level Health systems need to move towards providing what colorectal cancer patients value not just what providers and regulators value We need to better understand what matters to patients including quality of life factors help to define treatment success from a patient perspective and try to incorporate this into policy discussions and initiatives 5. There is a need to facilitate the sharing of big data to standardise approaches and compare outcomes Accessing large data sets of anonymous patient information can be invaluable for monitoring the quality of cancer care EURECCA (European Cancer Audit) is an example of an initiative utilising large data sets (from cancer registries) that provides invaluable information -- Urged by the considerable differences in survival rates between nations the European Society of Surgical Oncology (ESSO) launched EURECCA to identify a core dataset that covers all aspects needed for high quality auditing. In time this will lead to better clinical management and care for all colorectal cancer patients in Europe 6. A move towards a focus on prevention may resonate at a policy maker level If providers can be convinced to focus more on prevention it will help to reduce high treatment expenditure at a later stage However the full impact of this will require patience and long-term investment 7. National Cancer Plans are essential but are either not being developed or being poorly implemented in many countries National Cancer Plans are an important contributor to transparent, organised and managed efforts of modern societies in actions against cancer The EU Health Commission s aim was that by 2013 every Member State should have had in place a National Cancer Plan or Strategy and 100% coverage of formal population screening This goal has not been met CCPC 2013 reinforced the urgency for the implementation of formal population screening programmes and National Cancer Plans 8. More acceptable screening methods other than colonoscopy (e.g. FIT) may contribute to improved levels of compliance to screening Faecal immunochemical testing (FIT) is associated with better sensitivity than Guaic Faecal Occult Blood Test (gfobt) Although FIT is less effective it is potentially better accepted than colonoscopy its higher acceptance may counteract its lower efficacy in a population-based approach The comparative effectiveness of FIT and colonoscopy for preventing death from colorectal cancer will be assessed at the completion of an ongoing 10 year trial Executive Summary 5
Conference Outputs Throughout the organisation of the meeting and during the meeting itself new alliances were made and new initiatives were begun. Some of the key outcomes from the Conference include: A EuropaColon Expert Patient Advisory Group (EPAG) was established, facilitated by colorectal cancer survivors and patients. It is chaired by Mrs Barbara Moss, colorectal cancer survivor and Patient Advocate. EPAG s Mission is to: Help empower patients in Europe to be aware and able to make informed choices regarding their disease Commitment was secured from MEP Mr Petru Luhan who agreed to support the work of EuropaColon across the EU Promotion of the colorectal cancer Roundtable Meetings resulted in a very positive partnership with a number of stakeholders. These meetings intend to expand awareness of good clinical practice in cancer and improve local patient organisations advocacy skills. The first Roundtable Meeting took place in Poland in November 2013 with huge success and the second will be in Spain in September 2014. These meeting take place in association with national cancer patient organisations Throughout the lead-up to CCPC 2013 bi-weekly newsletters were sent to all MEP s outlining key points of EuropaColon s White Paper which were also reflected in the Conference Agenda As a direct result of the CCPC 2013 new partner groups have been established in Russia, France, Bulgaria, Ukraine and Turkey Representation from 95% of EuropaColon s Affiliate and Associate groups was achieved at the conference Visitors to the EuropaColon website soared throughout the run up, during and after the conference EuropaColon s Facebook followers increased to nearly 5000 in the three months prior to the meeting. In addition, post-conference data showed a marked increase in interest in EuropaColon s Facebook pages from all over Europe and the world Press releases were distributed via PR Newswire and other outlets, resulting in 1,945 links on news sites around the world To increase the longevity of the meeting, a sophisticated web-streaming system was implemented to enable the conference to remain online for one year. All speakers presentations and their materials were available on-demand (via an online presentation catalogue) through any web browser, or via podcasts. In the three weeks post event over 200 people viewed all or parts of the CCPC 2013 considerably expanding the audience from the meeting 6 Executive Summary
Conclusions The theme of this year s Conference Your life, your responsibility resonated strongly throughout the sessions and discussion. While in the past patient groups may have focussed more on what other stakeholders can do for us as patients now we must also focus on what we can do for ourselves, individually and collectively. In an ever fluctuating environment the role of the individual patient in shaping their own disease management and therefore outcomes is growing in importance. CCPC 2013 highlighted some of the key areas where patients and patients groups can help to lobby and influence improvements in the patient pathway from helping to define treatment success from a patient perspective and incorporating this into policy discussions and initiatives to driving the urgency for the implementation of formal population screening programmes and National Cancer Plans. Patient organisations have a major role to play in empowering individuals with colorectal cancer and can take the lead representing the patient voice in a single, unified, coherent way, which is more likely to be heard by policy makers. Importantly it was not just what was said at the meeting that resonated but the actions that took place around it. The establishment of the EuropaColon Expert Patient Advisory Group (EPAG) consisting of colorectal cancer survivors and patients will be instrumental in helping to empower patients in Europe. Meanwhile securing individual support at an MEP level and the regular pre-meeting communications with MEPs will help us to translate our objectives into tangible policy outcomes. The establishment of new partner groups in countries around Europe will strengthen the overall European voice as well as provide much-needed on-the-ground support in those countries. So while there are still many issues and inequalities to address there is much to be positive about. We must channel the positive energy generated by this meeting into strategies and initiatives, such as the ones highlighted in this report, which can influence improvements in the patient pathway and make a genuine difference to those living with and affected by colorectal cancer. Executive Summary 7
EuropaColon would like to thank all our Sponsors, Speakers and Attendees for contributing towards this 2nd European Colorectal Cancer Patient Conference. We hope that CCPC 2013 has encouraged independent and self-driven health choices by the citizens of Europe. because life matters! Co-funded by the Health Programme of the European Union www.europacolon.com www.facebook.com/europacolonhq twitter.com/#!/europacolon