Patvocates

🎄✨ From all of the Patvocates and European Patient Advocacy Institute #team to you, here’s a little holiday cheer 🎁! We had a blast making this and hope it brings you just as much joy and laughter. Season’s Greetings and have a Wonderful New Year!!!🎅🎶 (🔉On!) #HappyHolidays #NewYear

👏 It was an incredible and productive SafePolyMed Project Meeting in Leiden, Netherlands, on 14 and 15 November! Our Patvocates team members Olga Millán, PhD and Eglys González-Marcano joined the meeting to share key #progressupdates and insights achieved together with the project partner, LeukaNET. Organised by SafePolyMed-an #EU-funded initiative aimed at enhancing #medicationsafety for #patients with complex medication regimens-the meeting was packed with insightful presentations highlighting the collective achievements over recent months. We collaborated to explore new ideas and chart the next exciting steps of the project.  It was also an amazing opportunity last week to connect #facetoface and experience the warm hospitality of our hosts at Leiden University Medical Center, Leiden University. Special thanks to Jesse Swen, Maaike van der Lee, and Romy Mosch for your constant support and making this event possible!  The energy and collaborative spirit were truly motivating for all involved, and we are excited to continue advancing together. Looking forward to the upcoming results 🚀 #SafePolyMed #Polypharmacy #Collaboration #ProjectProgress

📢 We are pleased to announce the publication of the case study 🗎 on the 𝗦𝗲𝗿𝘃𝗶𝗲𝗿 𝗦𝗮𝗰𝗹𝗮𝘆 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵 𝗮𝗻𝗱 𝗗𝗲𝘃𝗲𝗹𝗼𝗽𝗺𝗲𝗻𝘁 (𝗥&𝗗) 𝗣𝗮𝘁𝗶𝗲𝗻𝘁 𝗘𝘅𝗽𝗲𝗿𝘁 𝗕𝗼𝗮𝗿𝗱! The result of a three-way #collaboration between Servier France, Patvocates and #patientexperts, it represents a significant step towards embedding #patientcentricity within Servier’s R&D institute in Paris-Saclay. The study details the journey of building this Board, from early planning through to its achievements, and its impact. It highlights how #patientinvolvement in #research and development led to co-created projects that prioritise patients' needs and enhance R&D practices. The Patvocates team served as the driving force behind this Board, creating the concept for Servier, overseeing the coordination of the five workstreams, recruiting the majority of participants and guiding the development of activities through to the completion of the publication. The team also supported the Patient Expert Board by recruiting patient experts representing ten disease areas and ten European countries—each playing a crucial role in contributing key insights. The case study also goes into the Board's outputs, from the establishment of a patient advisory council, an interactive gallery of patient experience in R&D, #patientengagement and entrepreneurship in life sciences, creating patient-focused decentralised trials (DCTs), to staff training on patient engagement. These efforts have laid strong foundations for ongoing patient inclusion within the company, fostering a shift from traditional, paternalistic approaches to a more inclusive, patient-centred framework. #Congratulations to all those involved, including the case study’s authors—Estelle Jobson, Marta Garcia Manrique, Danika Sharek, Laura Risueño Ayerbe, Sylvain Arnould, Aude Lemoine André, Jan Geissler, Ana Amariutei, Sabrina Grigolo, Begoña Nafría Escalera, Thomas Smith, Oriana Sousa, Linda Stone and Janet West—who have meticulously captured the insights and lessons from this journey. We hope the successful Patient Expert Board’s example will serve as a model for other organisations to engage meaningfully with patients and reinforce patient-centred values in their work. Link to case study: https://lnkd.in/dqsDvgtr

📅This #WorldMentalHealthDay, we stand in solidarity with those navigating the complexities and challenges of #mentalhealth experiences, including those also facing other long-term health conditions. 💚 We recognise that the journey to effective mental health care is often filled with barriers - ranging from #stigma to lack of access to psychosocial supports. Patvocates’ involvement in the Global Mental Health Community Summit 2024 organised by Boehringer Ingelheim in June this year highlighted the importance of #jointaction to tackle these challenges. Amidst growing calls to raise awareness about mental health issues, it brought together #patientadvocates, #healthcareprofessionals and #policymakers. We supported participants in identifying how #collaborative efforts can break down barriers, generate discussions to drive the availability of evidence-based interventions and elevate the voices of those most affected. In our work, Patvocates will continue to recognise the effects of, and the link between, living with long-term health conditions and the multifaceted ways this can impact on someone’s quality of life and experience with mental health conditions. We are determined to strengthen the patient community as well as stakeholders to develop a holistic view, recognising individuals in their entirety, beyond a diagnosis or set of symptoms. This places a focus on the full spectrum of their needs, experiences, and well-being, ensuring that care and support reflect this. Let's keep these key conversations going - for #WMHD2024 and beyond - for meaningful and sustained outcomes 🌟 Together with the community, we are working towards a future where everyone can thrive and have a strong voice in the decisions that impact on their lives. 

𝐏𝐚𝐭𝐢𝐞𝐧𝐭 𝐞𝐧𝐠𝐚𝐠𝐞𝐦𝐞𝐧𝐭 𝐢𝐬 𝐢𝐧 𝐨𝐮𝐫 𝐃𝐍𝐀! Earlier this week, we gathered our incredible team from all across Europe for a face-to-face meeting to map out the future direction of Patvocates and the European Patient Advocacy Institute. Over the course of a few days, we analysed our strengths, addressed our weaknesses, brainstormed on new ideas and shared insights of our experienced, diverse team. Our discussions were focused on pushing boundaries in strengthening the patient community, patient engagement and impactful collaboration with healthcare stakeholders. Such a dynamic group of passionate professionals - we are more excited than ever about the road ahead and the important team work we’re collectively doing for patient organisations and healthcare companies. We want to drive meaningful patient engagement and its future with full dedication, deep expertise and a strong commitment to making a difference. A special thanks to everyone who contributed to the inspiring conversations and fun-filled sessions! 👏👏👏 #LetsDoThis #PatientEngagement #FreshPerspectives #TeamCollaboration #FutureFocused

🗓️𝐔𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐓𝐫𝐚𝐢𝐧𝐢𝐧𝐠 𝐑𝐞𝐦𝐢𝐧𝐝𝐞𝐫❗ Only one more week to go before the “𝐒𝐚𝐟𝐞𝐭𝐲 𝐢𝐧 𝐏𝐨𝐥𝐲𝐩𝐡𝐚𝐫𝐦𝐚𝐜𝐲” training course registration deadline on 𝟐 𝐎𝐜𝐭𝐨𝐛𝐞𝐫 𝟐𝟎𝟐𝟒! To register, click here: https://lnkd.in/duFcbQce. Sign up and don’t miss out on the courses which will be starting soon. SafePolyMed #Polypharmacy #PatientSafety #EUProject #Patvocates #Training

🎉We are thrilled to have joined the two-day kick-off meeting of the newly launched IHI-SYNTHIA project in beautiful Valencia, Spain, on 9-10 September! Our team, represented by Eglys González-Marcano and Olga Millán, introduced Patvocates to the consortium, emphasising our commitment to patient advocacy and relevant role in this innovative European initiative. The meeting was an excellent opportunity to connect, collaborate and dive deep into the project’s vision. Work package leaders shared insights on upcoming tasks, identified potential challenges and engaged in lively discussions that set the stage for a successful collaboration. Breakout sessions provided focused teamwork, allowing us to align on goals and establish clear next steps. A huge thank you to the team at the Medical Research Institute La Fe (IIS La Fe) for hosting and organising such a productive event. We’re excited to work together with our SYNTHIA partners on this journey towards what we all expect to be a groundbreaking advancement in healthcare solutions. #SYNTHIA #IHI #PatientAdvocacy #HealthcareInnovation #Teamwork

Advancing diversity, equity and inclusion (#DEI) in healthcare research is essential in ensuring that the needs and concerns of the underserved and under-represented #patientcommunities are addressed. On 2 September, we had the opportunity to present our draft Patvocates DEI Roadmap at Boehringer Ingelheim’s three-day meeting with the global patient community on DEI in Amsterdam. Jan Geissler, stepping in for Khullat Munir, spoke at the workshop on the co-creation of a comprehensive and inclusive framework for increasing DEI in Boehringer Ingelheim’s #clinicaltrials and contributed to discussions The need for incorporating DEI perspectives into clinical trials has never been more critical. Under-represented and vulnerable patient groups often face barriers to participation in studies, yet ensuring their inclusion in protocol design, trial conduct and result communication is important for generating data that reflects the real-world diversity of patients. Without proper representation, treatments and medical care face the risk of being less effective for those who need them most. Focusing on DEI is a welcome step towards bridging these gaps, improving trial outcomes and delivering better healthcare for everyone. Our DEI Roadmap aims to address these barriers, offering recommendations for practical and meaningful patient input from diverse communities at different stages of planning, conducting and analysing clinical studies. It enables more effective #patientengagement, particularly among groups who may have been marginalised and provides a practical framework for organisations to operationalise their DEI goals. At Patvocates, we are very determined to support patient communities and researchers to strengthen diversity in research as a key step towards health equity. By integrating processes that focus on better representation, we can ensure that treatments are truly effective for all patients, not just select groups. A big thanks to the team at Boehringer Ingelheim, specifically Robina Weermeijer, Kimberley Kallsen and Bronwyn Lewis, for the opportunity to work together on furthering DEI objectives within clinical trials. We are excited to collaborate with all stakeholders across the clinical research landscape to bring diversity, equity and inclusion to life, and with our DEI Roadmap, help ensure that the diverse perspectives of patients are heard and represented at every step. #PatientEngagement #HealthEquity #Inclusion #RepresentationMatters #Patvocates

📢 𝐔𝐩𝐜𝐨𝐦𝐢𝐧𝐠 𝐓𝐫𝐚𝐢𝐧𝐢𝐧𝐠 𝐀𝐥𝐞𝐫𝐭 We are excited to announce the upcoming training course on “𝐒𝐚𝐟𝐞𝐭𝐲 𝐢𝐧 𝐏𝐨𝐥𝐲𝐩𝐡𝐚𝐫𝐦𝐚𝐜𝐲”, part of SafePolyMed, an EU-funded project where Patvocates is proud to be a partner, alongside Leukanet E.V.. This course has been carefully developed in close partnership with patient experts who bring their valuable real-life experiences and wide expertise to the table. Not only have they played a key role in shaping the content, but they will also be leading the training sessions! Whether you are a patient, carer or advocate, this course is designed to empower you with essential knowledge to safely manage multiple medications. Join us! 🗓️To register for this training, click here: https://lnkd.in/duFcbQce Please note that the registration deadline is 2 October 2024, with courses being held throughout the month. Sign up early, as spots fill up quickly! #Polypharmacy #PatientSafety #EUProject #SafePolyMed #Patvocates #Training

📅 It has been a discussion-filled few days for Patvocates’ Jan Geissler and Ananda Plate, who took part as trainers at the “OIFE Educational Conference – Stronger Together” in Valencia, Spain last weekend. Osteogenesis Imperfecta Federation Europe (OIFE) is an umbrella association for #patientorganisations dealing with the rare Osteogenesis Imperfecta (OI) condition which is also known as brittle bone disease - an amazing, energetic, pan-European community of patients and carers. The focus was on #capacitybuilding within the OI community, with the aim of empowering #patientadvocates and organisations. #OsteogenesisImperfecta is a group of rare genetic conditions that affects bone and connective tissue. Those living with OI face many challenges, including bone fragility, short stature, scoliosis, hearing impairment, and dental issues. The complexities of the disease call for continuous efforts to improve treatments and ensure that #patientvoices are heard in every aspect of their care and research. At this OIFE conference, Jan Geissler presented three training sessions to the OI community. Jan’s first presentation provided attendees with an understanding of how patients can be integral partners in clinical #research, ensuring that new treatments are developed with their needs in mind. In the second session, he spoke about EMA’s drug development and patient involvement processes as well as EUPATI, the European Patients’ Academy. His third talk covered sustainable fundraising strategies, diversification of funding, and how to write successful funding applications, encompassing actionable guidance on securing funding for OI organisations and advancing their initiatives. Ananda Plate’s presentation addressed a vital area of industry collaborations, offering strategies for forging meaningful #partnerships with #healthcare and pharmaceutical companies. She also described the various interests of all stakeholders in the healthcare ecosystem, how to maintain credibility and independence, and about the WECAN guiding principles on reasonable legal agreements. Joint efforts can potentially benefit the patients as it can improve appropriate treatment and care as well as access for those living with rare diseases such as OI. Building on the wonderful learning opportunities throughout the conference, we hope that the OI community is in a great position to tackle the pressing issues facing their organisations and the individuals they represent. Training on topics such as the involvement of patients in clinical trials, fundraising, medicines development and working with industry is important to make sure that the needs of patients are addressed in the healthcare, regulatory and funding spaces. It has been a great occasion to share knowledge and experiences together. Our heartfelt thanks to the OIFE team including Ingunn Westerheim for hosting the wonderful conference and for their ongoing dedication to advocating for those with OI. 🙏 #PatientEngagement