Meaningful Patient Advocacy Teodora Kolarova Executive Director International Neuroendocrine Cancer Alliance Milan, Italy 2 December 2017
Highlights Introduction to the International Neuroendocrine Alliance (INCA) INCA White Paper on Unmet Needs in NETs: Results of a recent international survey of patients needs What can we do together to close the gaps?
INCA: The Global Voice of NET Patients INCA is a non-profit charitable organization made up of 20 patient advocacy and research groups from 17 countries around the world
INCA Who We Are? 20 Full Members from Asia, Asia Pacific, Europe, and North America A.I.N.E.T., Italy AMEND, UK APOZ, Bulgaria APTED, France Carcinoid Cancer Foundation, USA CarciNor, Norway CARPA Sweden CNETS Canada CNETS India CNETS Singapore NET Patient Foundation, UK NET Patient Network, Ireland NET Research Foundation, USA NETPA Denmark Netzwerk Neuroendokrine Tumoren, Germany PANCAN Japan PheoPara Troopers, USA Unicorn Foundation, Australia Unicorn Foundation, New Zealand VZW NET & MEN Kanker, Belgium
INCA: The Global Voice of NET Patients Mission be the global voice for patients with NETs Raise awareness about NETs Advance NET research Strengthen member organizations/ create new groups
INCA: The Global Voice of NET Patients Collaboration is key We wish to work together to solve common problems - in one team with the top NET experts, to make a difference for the NET community around the globe Evidence-based advocacy is the game-changer and it is only by joining efforts on a working platform that we can transform the future of NET care
INCA Unmet Needs in NETs Assessment Survey Among Key Stakeholders In-depth interviews with 20 patient and medical leaders Online survey in 26 countries
INCA Unmet Needs in NETs Survey Objectives: increase understanding of the perceptions of unmet needs for NET patients, patient group leaders and health professionals establish an evidence base on unmet needs so that the global NETs community can identify priorities for action that will improve patient outcomes provide a platform for discussion with the medical community, to inspire a collaborative effort to tackle the unmet needs identified identify unmet needs with global perspective - common to many countries develop solutions to address the gaps working as a team of patients, advocates and NET specialists around the world INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017 INCA Unmet Needs in NETs Survey Information on NETs
INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017 INCA Unmet Needs in NETs Survey
INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017 INCA Unmet Needs in NETs Survey
Unmet Needs in Information on NETs Information on NETs INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Access to Appropriate Care INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Access to Appropriate Care Both NET patient and medical communities recognize the need to advocate together for a global standard of access to appropriate care including the latest technologies and diagnostic/treatment services and tools for NET patients around the globe INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Each group were asked to rank the following research areas in order of priority, where 1 is most important and 7 least important to them. Research Priorities Patient Leader Patient and Family Healthcare Professional Basic science to understand what causes tumors to form and grow as a pathway to discovering a cure 4 2 5 Basic or translational research focused on longer survival Research focused on improving quality of life; controlling/managing symptoms Accurate, minimally invasive disease monitoring 5 4 4 3 3 2 7 6 6 Earlier, more accurate diagnosis 1 1 3 Clinical trials to improve current treatments, test new ones 2 5 1 Development of national and international 6 7 7 NET patient registries INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Research and Clinical Trials INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Why Involve Patients in Research? Some benefits: Better understanding of patient priorities and their expectations from NETs research Consideration of how it feels to be involved in research as an individual patient hopes, fears, impacts on their life Improving communication and understanding of research programs, clinical trials and their results by using lay language Enabling more effective advocacy on the need for funding of NETs research to potential funders: governments, non-profit organisations and individual donors Improving awareness of important clinical trials in the patient community INCA White Paper on Unmet Needs in NETs, 2017
INCA Unmet Needs in NETs Survey Online surveys INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Discussion - Information: Good quality information factually accurate and easy to understand in the local language especially crucial for a patient who has just been diagnosed with NETs. Informed patients can take a more active role in their care as they understand the condition, symptoms and available treatment options. Thus, patients can participate in decision-making. INCA and national patient organisations together with the medical community have an important role in outlining which expectations are not being met and closing the information gaps. INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Discussion Access to Appropriate Care: MDTs should be made aware of the activities of local groups to signpost them to appropriate patients. Patient support groups = an extension of the MDT in terms of community liaison referring patients between each other. There needs to be national and global advocacy for MDTs as an essential model for delivering care to NETs patients. A clear pathway to be established for NET - supported by the national health system so that patients in outlying areas of a country will follow the same pathway to gain the same access to specialist centre care. INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Discussion Access: Patient representatives are not routinely consulted as part of Health Technology Assessment processes. The approval system for innovative technologies compares between a new treatment or diagnostic vs. the existing standard = no consideration of how decisions on care impact the patient s quality of life. Global co-operation between NETs patient organisations and medical communities may achieve greater influence compelling argument that technology supports more efficient delivery of care. INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Priorities for Action: patients, advocates and clinical leaders to close the gaps and improve the lives and prospects of the increasing numbers of NET patients: to provide referrals to each other to ensure that valid, reliable information is provided to patients and families in a timely fashion to secure more support for NET research and to involve the patient voice in both advocacy and design of research and clinical trials to advocate together for a global standard of access to care including the latest technologies and diagnostic/treatment tools for NET patients around the globe INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Unmet Needs in NETs Survey Priorities for Action: greater collaboration across the globe to ensure patient knowledge of and participation in clinical trials specialized education amongst healthcare professionals to facilitate effective diagnosis and better treatment outcomes greater awareness of the benefit of MDT care among the key professions, especially in the first line specialities, and the role of the NET nurse resources/funding for patient groups to provide support and information, which can empower patients to be active partners in the treatment process INCA Unmet Needs in NETs Assessment Survey among Key Stakeholders, 2017
INCA Created A Day to Talk about NETs