Patvocates’ Post

Industry professionals - asking, "What service do you offer?" is the wrong way to initiate your first interaction with patient advocacy groups. They’re equal partners, not vendors. Leave that “Partner Qualification” checklist behind and do your homework before reaching out. ↳ Understand their strategic goals  ↳ Know who and how they collaborate with partners ↳ Identify mutual opportunities ↳ Anticipate potential concerns and blockers No one wants to feel “vetted”. Trust starts with your first outreach. Be informed, be transparent and give these partnerships your best shot. Remember: your first conversation is their chance to vet 𝙮𝙤𝙪. #patientadvocacy #healthalliance #patientcentricity _______________________ Hi 🤩 I’m Anne-Marie, founder of Zebricks. Our mission is to scale the impact of patient advocacy market research through technology. Struggling to perform effective research to drive meaningful relationships with PAGs? DM me and lets explore ways to remove those barriers.

🌟 Exciting Announcement! 🌟 Patient Insight Congress is led by none other than Rebekah Angove, PhD, Executive Vice President, Research and Evaluation at Patient Insight Institute! 🎉 At 1 PM, Dr. Angove will kick off our event with her expertise, setting the stage for an engaging and enlightening experience. Don't miss this chance to connect with industry leaders and gain valuable insights into the world of patient advocacy and healthcare research. #PatientInsights24

The traditional way of measuring #medicalimpact has many gaps because it doesn’t encompass all of the activities that #MedicalAffairs teams engage in. Combining metrics like surveys and advocacy efforts with digital strategy components provides a more complete picture of performance and connects patient outcomes with clinical behavior and scientific sentiment. To enhance your strategy, you’ll need to focus on 5 key areas. See what they are in our blog post: A Holistic Approach to Measuring Impact. https://hubs.la/Q02w1rRV0 #medaffairs #measuringimpact #medicalaffairsimpact

📢 Take the EULAR Impact of RMDs Survey and share how RMDs impact your healthcare, social life, and work. Your insights are essential for: • 🧑🔬Rheumatology healthcare professionals • 📊 Researchers • 📣 Advocacy groups • 💬 People living with RMDs Together, we can drive meaningful improvements in patient care and make a real difference! 🔗 Take the Survey Now: https://lnkd.in/dGc-X_xN #eularRESEARCH #PatientVoice #RMDimpact

⏱️ 15 hours. That’s how long Parexel's Patient Partnership team spent doing desk research into the Patient Advocacy Group (PAG) landscape for every study. Although essential, those 15 hours could be better spent forming meaningful partnerships and driving patient-guided efforts forward. Equipped with real-time and comprehensive insights into PAGs, turning hours of desk research into minutes, Parexel can reallocate the time saved on what really matters—patients. Curious how Zebricks helped transform their approach? Read their story: https://lnkd.in/e8WU8nyv #patientengagement #patientadvocacy #Parexel

📢 Take the EULAR Impact of RMDs Survey and share how RMDs impact your healthcare, social life, and work. Your insights are essential for: • 🧑🔬Rheumatology healthcare professionals • 📊 Researchers • 📣 Advocacy groups • 💬 People living with RMDs Together, we can drive meaningful improvements in patient care and make a real difference! 🔗 Take the Survey Now: https://lnkd.in/dGc-X_xN #eularRESEARCH #PatientVoice #RMDimpact

📢 Take the EULAR Impact of RMDs Survey and share how RMDs impact your healthcare, social life, and work. Your insights are essential for: • 🧑🔬Rheumatology healthcare professionals • 📊 Researchers • 📣 Advocacy groups • 💬 People living with RMDs Together, we can drive meaningful improvements in patient care and make a real difference! 🔗 Take the Survey Now: https://lnkd.in/dGc-X_xN #eularRESEARCH #PatientVoice #RMDimpact

Please join me in wishing Richie Kahn a very happy birthday today! 🎂 Richie is one of the hardest working advocates in the #raredisease space, yet he always finds time to help so many of us (including me). Richie has been influential in making #clinicaltrials more accessible. Let's talk to him today on #PatientsFirst Friday: 👉 What's one thing you want people to know? "A public health professional by training, clinical researcher by trade, and patient advocate by necessity I'm also a clinical trial participant myself. There's no better way to learn about the patient experience then to participate in a trial yourself. I encourage all clinical research professionals to participate in a trial at least once.:" 👉 What's critical to a successful patient advocacy/industry partnership? "A successful advocacy/industry partnership is one based on mutual respect, shared goals, and trust. Though it takes time to build rapport and create trust, ultimately it's all about the patients we serve. If you're reaching out on behalf of industry, be clear about who you are, the good work you do, the purpose of your outreach, and what you're hoping to achieve. If you're on the advocacy side, it's similarly important to have a feel for the work you're most interested in and the kinds of initiatives that align with organizational goals and objectives." Learn more about Richie and his work here: https://lnkd.in/g5Rik96i https://lnkd.in/gfX-G4ma Finish your work week strong with patients and #WithHeart! #WolframSyndromeAwarenessDay

📢 Share your healthcare experiences and how RMDs impact your daily life, both socially and at work. Your insights are crucial for: • 🧑🔬Healthcare and Heath professionals in Rheumatology • 📊 Researchers • 📣 Advocacy groups • 💬 People with RMDs Together, we can drive significant improvements in patient care and make a real difference! 🔗 Watch the video here: https://lnkd.in/esCWzq6Z 🔗 Take the survey here: https://lnkd.in/eBjJ8xAm #eularRESEARCH #PatientVoice #RMDimpact

📢 Take the EULAR Impact of RMDs Survey and share how RMDs impact your healthcare, social life, and work. Your insights are essential for: • 🧑🔬Rheumatology healthcare professionals • 📊 Researchers • 📣 Advocacy groups • 💬 People living with RMDs Together, we can drive meaningful improvements in patient care and make a real difference! 🔗 Take the Survey Now: https://lnkd.in/dGc-X_xN #eularRESEARCH #PatientVoice #RMDimpact