How to Build Meaningful Relationships and Shift to Patient-Led Conversations for Improved Study Design and Execution

Maria Dutarte is the Executive Director of the European Patients’ Academy (EUPATI) since 2020. Maria has previously worked for the European AIDS Treatment Group (EATG) coordinating patient involvement in a number of training initiatives and scientific projects. She has also worked for different scientific and international organisations, e.g. French National Research Center for Scientific Research (CNRS), International AIDS Society (IAS), The Global Fund to Fight AIDS, Tuberculosis and Malaria and The International Foundation for Science (IFS). Her educational background is in International Education and Communications.

The Lewy Body Society (LBS) registered charity 1114579, established in 2006, is the only registered Charity in Europe which is exclusively concerned with dementia with Lewy bodies (DLB). The charity's mission is to raise awareness of DLB amongst the general public and educate those in the medical profession and decision-making positions about all aspects of the disease as well as to support and fund research into the disease. For ten years the LBS has raised awareness, provided support and information, and funded research into DLB, which is the second most frequent cause of age-related neurodegenerative dementia. In the UK approximately 100,000 people are thought to suffer from DLB. It is closely related to dementia occurring in people with Parkinson’s disease, referred to as Parkinson’s disease dementia (PDD), and which may affect a further 30,000 people. The needs of these two groups are different from people with other types of dementia. Both are caused by abnormal deposits of the protein alpha-synuclein in the brain which cause cell death. Together the two diseases are referred to as Lewy body dementia (LBD). Jacqui Cannon CEO of The Lewy Body Society lost her father to dementia with Lewy bodies 6 years ago and has worked tirelessly on a voluntary basis for the Society since its early days, taking on increasing responsibilities first as a secretary-treasurer then as CEO pro tem which turned into a permanent position, which she performed in addition to a full-time job. Jacqui has 30 years of experience as a Senior Business Analyst working for major companies including Accenture.

Driven by a passion for reducing time-to-patient and transforming the life sciences industry, I am dedicated to empowering patients and enhancing the business ecosystem. My work focuses on the human aspect of the Drug Development Cycle, delivering strategic solutions that foster innovation, prioritize patient needs, and promote patient empowerment. I am one of the founders of Partners4Patients Foundation, whose mission is to catalyze goodwill and provide decisive support in setting up and organizing multi-stakeholder alliances while putting patients in the driver's seat. In 2020, I joined admedicum as a Senior Partner, becoming Co-Owner in 2022. Our team excels in patient-focused initiatives, integrating patient-centric practices into daily operations across Europe, the US, and Asia. Our consecutive wins of the International Life Sciences GHP Best Patient Engagement & Access Expert award in 2022 and 2023 underscore our commitment to excellence. With over 20 years in the life sciences sector, including over a decade as CEO of Clinical CRO and Biotech & Medtech startups, my deep industry knowledge is an asset. As CEO of PSR Orphan Experts (acquired by Ergomed Plc in 2017), I advanced progress by implementing lean principles and focusing on Rare Diseases, earning recognition with the CEO Today Europe 2018 award and the International Life Sciences GHP Drug Development CEO award.

A global leader in patient-focused medicine development, a medical biochemist, and a psychotherapist and volunteer counsellor, Emma is a true example of where science meets empathy. From starting her career as a medical writer working in HIV, Emma has gone on to win a multitude of awards and speak at countless conferences as a champion for patient engagement over the past 30 years. With experience working across biopharma, agencies, and now more recently a patient organisation, Emma is a firm believer in the importance of patient engagement professionals coming together – regardless of background or ‘title’ – to learn from each other, co-solve challenges, and advance best practices.

Micah has 20 years of experience in the biopharma industry. He is an Executive Director at Cambridge Healthtech Institute (CHI) where he is a producer, content developer, and facilitator of the Summit for Clinical Ops Executives (SCOPE), the leading event in the US and Europe for biopharmaceutical industry executives focused on driving innovation in clinical trials and digital health. On a daily basis, he builds a broad community of clinical research stakeholders and industry thought leaders, performs market research, and ascertains ever-changing industry trends in clinical trial optimization, clinical innovation, patient recruitment, digital health, drug development, clinical trial technology, and population health. He is also the Co-founder and Vice President of Community and Business Development of ClinEco. ClinEco unites sponsors, CROs, service providers, and sites on the world's first B2B global clinical trial marketplace so each can expand clinical partnerships. SCOPE and ClinEco are owned by Cambridge Healthtech Institute (CHI). Please join our SCOPE and ClinEco communities! https://clineco.io/; www.SCOPEsummit.com; www.SCOPEsummiteurope.com