# Patient Advocacy * **Definition:** The act of supporting and promoting the interests and rights of patients within the healthcare system, ensuring they receive appropriate care, resources, and that their voices are heard. * **Taxonomy:** Healthcare Topics / Patient Advocacy ## News * Selected news on the topic of **Patient Advocacy**, for healthcare technology leaders * 6K news items are in the system for this topic * Posts have been filtered for tech and healthcare-related keywords | Date | Title | Source | | --- | --- | --- | | 5/27/2025 | [**Ready for health AI? It may depend on your practice setting - American Medical Association**](https://www.ama-assn.org/practice-management/digital-health/ready-health-ai-it-may-depend-your-practice-setting) | [[AMA]] | | 5/19/2025 | [**Ty Wang, Co-Founder and Chief Executive Officer of Angle Health**](https://www.beckershospitalreview.com/podcasts/uncategorized/ty-wang-co-founder-and-chief-executive-officer-of-angle-health-2/) | [[Beckers Hospital Review]] | | 5/13/2025 | [**Health IT Hires, Appointments, and Who's Hiring**](https://www.healthitanswers.net/health-it-hires-appointments-and-whos-hiring-051325/) | [[Health IT Answers]] | | 5/6/2025 | [**Trellis Health Appoints Esteemed Healthcare Executives to Inaugural Advisory Board**](https://finance.yahoo.com/news/trellis-health-appoints-esteemed-healthcare-130000629.html) | [[Yahoo Finance]] | | 4/14/2025 | [**From Startup to Global Leader: How CTI is Shaping the Future of Clinical Research in Ohio and Beyond**](https://www.fiercebiotech.com/sponsored/how-cti-shaping-clinical-research-ohio-and-beyond) | [[FierceBiotech]] | | 3/9/2025 | [**The future of clinical trials: Are we ready? - Kevin MD**](https://kevinmd.com/2025/03/the-future-of-clinical-trials-are-we-ready.html) | [[KevinMD]] | | 2/28/2025 | [**Pharma Competitive Benchmarking - How a Pharma Leader Gained a Strategic Edge with DelveInsight**](https://www.globenewswire.com/news-release/2025/02/28/3034965/0/en/Pharma-Competitive-Benchmarking-How-a-Pharma-Leader-Gained-a-Strategic-Edge-with-DelveInsight.html) | [[Globe Newswire]] | | 2/28/2025 | [**How a Pharma Leader Gained a Strategic Edge with DelveInsight - Yahoo Finance**](https://finance.yahoo.com/news/pharma-competitive-benchmarking-pharma-leader-180000283.html) | [[Yahoo Finance]] | | 2/28/2025 | [**Pharma Competitive Benchmarking - How a Pharma Leader Gained a Strategic Edge with DelveInsight**](https://uk.finance.yahoo.com/news/pharma-competitive-benchmarking-pharma-leader-180000283.html) | [[Yahoo Finance UK]] | | 1/28/2025 | [**Medtech Momentum: Reflections on 2024 & Predictions for 2025**](https://www.mddionline.com/software/medtech-momentum-reflections-on-2024-predictions-for-2025) | [[MDDI]] | | 1/20/2025 | [**How Healthcare Leaders Reacted to the 15 Additional Drugs Selected for Medicare Negotiation Program**](https://medcitynews.com/2025/01/medicare-drug-prices-negotiation/) | [[MedCity News]] | | 12/12/2024 | [**Tracey Sikora Joins the National Organization for Rare Disorders (NORD®) as Vice ...**](https://www.prnewswire.com/news-releases/tracey-sikora-joins-the-national-organization-for-rare-disorders-nord-as-vice-president-of-research--clinical-programs-302329617.html) | [[PR Newswire]] | | 12/9/2024 | [**Kelly Esperias Joins the National Organization for Rare Disorders (NORD) as Chief Strategy & Operations Officer**](https://www.prnewswire.com/news-releases/kelly-esperias-joins-the-national-organization-for-rare-disorders-nord-as-chief-strategy--operations-officer-302326390.html) | [[PR Newswire]] | | 11/21/2024 | [**Slone Partners Places Amy Nicole Nayar as President and CEO at the Personalized Medicine Coalition**](https://www.prweb.com/releases/slone-partners-places-amy-nicole-nayar-as-president-and-ceo-at-the-personalized-medicine-coalition-302312436.html) | [[PRWeb]] | | 11/8/2024 | [**Viz.ai Expands AI Capabilities for Lung Disease Detection**](https://thehealthcaretechnologyreport.com/viz-ai-expands-ai-capabilities-for-lung-disease-detection/) | [[Healthcare Technology Report]] | | 10/8/2024 | [**SEQSTER CEO Ardy Arianpour Named to PharmaVoice 100 for Innovation in Life Sciences for a Second Consecutive Year**](http://www.businesswire.com/news/home/20241008712158/en/SEQSTER-CEO-Ardy-Arianpour-Named-to-PharmaVoice-100-for-Innovation-in-Life-Sciences-for-a-Second-Consecutive-Year/?feedref=JjAwJuNHiystnCoBq_hl-RLXHJgazfQJNuOVHefdHP-D8R-QU5o2AvY8bhI9uvWSD8DYIYv4TIC1g1u0AKcacnnViVjtb72bOP4-4nHK5ieT3WxPE8m_kWI77F87CseT) | [[Business Wire]] | | 10/8/2024 | [**SEQSTER CEO Ardy Arianpour Named to PharmaVoice 100 for Innovation in Life Sciences for a Second Consecutive Year**](http://www.businesswire.com/news/home/20241008712158/en/SEQSTER-CEO-Ardy-Arianpour-Named-to-PharmaVoice-100-for-Innovation-in-Life-Sciences-for-a-Second-Consecutive-Year/?feedref=JjAwJuNHiystnCoBq_hl-Q-tiwWZwkcswR1UZtV7eGe24xL9TZOyQUMS3J72mJlQ7fxFuNFTHSunhvli30RlBNXya2izy9YOgHlBiZQk2LOzmn6JePCpHPCiYGaEx4DL1Rq8pNwkf3AarimpDzQGuQ==) | [[Business Wire]] | | 10/8/2024 | [**SEQSTER CEO Ardy Arianpour Named to PharmaVoice 100 for Innovation in Life Sciences ...**](https://www.morningstar.com/news/business-wire/20241008712158/seqster-ceo-ardy-arianpour-named-to-pharmavoice-100-for-innovation-in-life-sciences-for-a-second-consecutive-year) | [[Morningstar]] | | 10/3/2024 | [**TALHospitals Announces HealthFest 2024 where Global Leaders Convene to Reimagine Healthcare for a Healthier Tomorrow**](https://www.prnewswire.com/news-releases/talhospitals-announces-healthfest-2024-where-global-leaders-convene-to-reimagine-healthcare-for-a-healthier-tomorrow-302266319.html) | [[PR Newswire]] | | 8/30/2024 | [**The Future Design of Cancer Patient Advocacy is Here! - MarketScale**](https://marketscale.com/industries/podcast-network/rethink-healthcare/cancer-patient-advocacy/) | marketscale.com | | 8/24/2024 | [**You're passionate about patient advocacy. How can innovation drive your efforts forward?**](https://www.linkedin.com/advice/0/youre-passionate-patient-advocacy-how-can-innovation-jdttf) | [[Linkedin]] | | 8/6/2024 | [**The Damouni Group Announces Launch of Strategic Communications and Corporate Affairs Agency**](http://www.businesswire.com/news/home/20240806799548/en/The-Damouni-Group-Announces-Launch-of-Strategic-Communications-and-Corporate-Affairs-Agency/?feedref=JjAwJuNHiystnCoBq_hl-RLXHJgazfQJNuOVHefdHP-D8R-QU5o2AvY8bhI9uvWSD8DYIYv4TIC1g1u0AKcacnnViVjtb72bOP4-4nHK5ieT3WxPE8m_kWI77F87CseT) | [[Business Wire]] | | 7/29/2024 | [**Thumos Care Proposes Market-Friendly Universal Basic Health - PR Newswire**](https://www.prnewswire.com/news-releases/thumos-care-proposes-market-friendly-universal-basic-health-302208521.html) | [[PR Newswire]] | | 6/28/2024 | [**Registrations Open for the 2024 Orphan Drugs and Rare Diseases Conference**](https://finance.yahoo.com/news/registrations-open-2024-orphan-drugs-142600765.html) | [[Yahoo Finance]] | | 12/17/2023 | [**Alzheimer's drug approvals show we need a reevaluation of patient advocacy**](https://www.statnews.com/2023/12/18/patient-advocacy-alzheimers-lecanemab-aducanamab-fda/) | [[STAT]] | ## Topic Overview (Some LLM-derived content — please confirm with above primary sources) ### Key Players - **Advocate Health**: A healthcare system emphasizing patient engagement and health literacy to improve outcomes. - **Healthcare Advocate Summit**: An organization focused on improving healthcare access and addressing medication access challenges through advocacy and education. - **OS Therapies Incorporated**: A company that has established a Patient Advocacy Advisory Board to gather insights from the osteosarcoma community. - **DelveInsight**: A consulting firm that conducts competitor analysis to enhance patient advocacy strategies for pharmaceutical companies. - **FDA**: The U.S. Food and Drug Administration, which provides guidance to enhance diversity and inclusion in clinical trials, emphasizing the importance of patient advocacy. - **Moderna**: A biotechnology company that faced challenges in clinical trial representation, highlighting the need for patient advocacy in ensuring diverse participant demographics. - **Personalized Medicine Coalition (PMC)**: An organization advocating for personalized medicine and patient-centered initiatives. - **Parent Project Muscular Dystrophy**: A leading patient advocacy organization for Duchenne muscular dystrophy, involved in supporting research and patient education. - **CG Life**: A marketing agency focusing on precision medicine and rare diseases, enhancing patient engagement through strategic communications. - **Thumos Care**: A company proposing the AI-Enhanced Universal Health and Prevention Act to improve access to preventive health services. - **Global Genes**: A patient advocacy organization that received funding to enhance its RARE-X patient data platform for rare diseases. - **James L. Madara, MD**: CEO of the American Medical Association (AMA), advocating for diversity in clinical trials. - **Thera4Care consortium**: A newly launched initiative aimed at enhancing access to precision medicine for cancer treatment across Europe, involving multiple partners including patient advocacy groups. - **Dr. Anne Beal**: A leader in clinical innovation and patient advocacy, appointed to the Board of Omada Health, with a commitment to integrating patient voices into research. - **GLLG**: A healthcare leadership organization focused on restoring humanity in healthcare through personalized leadership approaches. - **Cytokinetics, Incorporated**: A company providing grants to patient advocacy organizations focused on heart conditions. - **Tigerlily Foundation**: A nonprofit organization advocating for young women with breast cancer, emphasizing patient engagement in clinical trials. - **Minds + Assembly**: A healthcare communications company that has partnered with BOLDSCIENCE to enhance strategic communications in the healthcare sector. - **Every Cure**: A nonprofit organization utilizing AI for drug repurposing, focusing on health equity and access to care. ### Partnerships and Collaborations - **Healthcare Advocate Summit**: Collaborating with healthcare professionals to ensure accessibility and improve patient outcomes through advocacy. - **Rise to Health Coalition**: Launched by the AMA and partners to promote diversity in health innovation and clinical trials. - **Coalition for Health AI (CHAI)**: Introduced a draft framework for responsible AI development in healthcare, emphasizing equitable benefits across populations. - **Business Collaborative for Brain Health**: Led by UsAgainstAlzheimer's, this initiative aims to enhance employee cognitive health through best practice evaluations. - **Tigerlily Foundation and Labcorp**: Collaborated to create a framework for authentic engagement in clinical trials, focusing on underserved populations. - **Rare Disease Diversity Coalition (RDDC)**: Collaborating to enhance care equity for individuals with rare diseases, including publishing white papers on health equity. - **Project-COMFORT**: A public-private partnership involving 51 organizations to improve blood collection methods for patients. - **Nabla and Coalition for Health AI (CHAI)**: Joining forces to establish best practices and frameworks for health AI validation. - **Minds + Assembly and BOLDSCIENCE**: A merger aimed at enhancing healthcare communications and commercialization efforts. - **Viz.ai and Addario Lung Cancer Medical Institute**: Collaboration to enhance early identification and treatment for high-risk lung disease patients. - **Healthcare2U and Clearwater Benefits**: A strategic alliance to provide affordable healthcare solutions, combining direct primary care with cost-effective employee benefit plans. - **Thera4Care consortium**: Involves 29 partners, including academic institutions and industry leaders, to broaden the availability of theranostics for cancer treatment. - **MIT Sloan School of Management and Boston Children's Hospital**: Collaborating to enhance the affordability and accessibility of gene therapies, particularly for ultra-rare diseases. - **Omada Health and Dr. Anne Beal**: Dr. Beal's appointment aims to enhance patient-centered solutions and expand virtual care access. - **Daiichi Sankyo and local scientific community**: Daiichi Sankyo aims to collaborate with local scientific communities, government organizations, and patient advocacy groups in Greece to improve cancer treatment. - **Charles River Laboratories and FOXG1 Research Foundation**: Collaborating to advance gene therapy for FOXG1 syndrome. - **RARE-X**: A patient data platform supported by Global Genes to facilitate data collection for rare disease research. - **SCRS Collaborate Forward**: An initiative sponsored by Fortrea to improve clinical trial planning through collaboration. ### Innovations, Trends, and Initiatives - **Patient Advocacy in Rare Diseases**: Efforts to enhance patient engagement and data collection for rare diseases through collaborative initiatives. - **Digital Tools in Patient Advocacy**: The use of data analytics, telehealth, and wearable technology to enhance patient advocacy efforts and improve healthcare access. - **Patient Advocacy Advisory Board (PAAB)**: Established by OS Therapies to gather insights from the osteosarcoma community. - **Advancements in Alopecia Areata Treatments**: Highlighting the role of patient advocacy groups in improving access to new therapies. - **Data Analytics Tools**: Providing insights into advocacy efforts to tailor strategies based on effective interventions. - **Telehealth Platforms**: Facilitating virtual connections between patient advocates and clients, improving accessibility. - **Cytokinetics Communications Grant Program**: Awards to patient advocacy organizations to enhance awareness and community engagement. - **Electronic Health Records (EHR)**: Crucial for maintaining accurate patient information, enabling quick access for advocates. - **Increased Patient Involvement in FDA Approvals**: The FDA has been involving patients more in the drug approval process, allowing public testimony. - **Patient-Centered Care**: An approach emphasized by healthcare leaders to combat nurse burnout and improve patient outcomes. - **Diversity in Clinical Trials**: The FDA has issued guidance recommending strategies for enhancing diversity in clinical trials, including early engagement with patient advocacy groups. - **HealthFest 2024**: An event focusing on preventive, predictive, and prescriptive healthcare, providing a platform for patient advocacy groups to connect with stakeholders. - **I AM INCLUDED framework**: Aims to enhance inclusivity in clinical trials by prioritizing patient and community perspectives. - **Generative AI in Clinical Decision Support**: Establishment of an advisory council to oversee responsible AI use in clinical settings. - **Generative AI for Prior Authorization**: Emerging technology helping physicians draft insurer letters quickly, improving approval rates for treatments. - **FDA Diversity Strategy**: Aimed at enhancing diversity in clinical trial participation to improve healthcare outcomes. - **California's Physicians Make Decisions Act**: A new law regulating the use of algorithms in healthcare decision-making, emphasizing human oversight and transparency. - **AI-Enhanced Universal Health and Prevention Act of 2024**: Proposed legislation aimed at providing equitable access to AI-enhanced preventive health services. - **AI in Healthcare**: The integration of artificial intelligence in healthcare to enhance patient engagement and streamline clinical trials. - **Decentralized Clinical Trials**: Innovative trial designs allowing remote patient participation to improve accessibility and efficiency. ### Challenges and Concerns - **Corporate Influence on Advocacy**: Concerns about financial ties between biotech firms and advocacy organizations potentially influencing patient perspectives. - **Disproportionate Influence of Large Advocacy Groups**: Concerns that large advocacy organizations with significant industry funding may exert undue influence over patient representation. - **Drug Price Negotiation Policy**: Concerns from patient advocacy groups about the potential negative impact on drug development and patient access to necessary medications. - **Health Equity**: Ongoing disparities in healthcare access and outcomes for underserved populations, necessitating focused advocacy and initiatives. - **Trust in Clinical Trials**: Need for involving community leaders and patient advocacy groups to foster trust in clinical research. - **Ethical Considerations in Drug Approval**: The controversy surrounding the approval of drugs like aducanumab due to safety concerns and limited efficacy evidence. - **Regulatory Adaptation**: The need for regulatory agencies to adapt policies to accommodate innovations in clinical trials while maintaining integrity. - **Patient Access to Medications**: Lengthy approval processes for new treatments can hinder timely patient access. - **Mistrust in Healthcare**: The clinical research industry must address mistrust among diverse patient populations, particularly those with rare diseases, to improve trial participation. - **Regulatory Clarity for AI**: Need for clear regulations regarding patient-facing AI applications to prevent misinformation and ensure safety. - **Healthcare Disparities**: Significant barriers faced by marginalized communities in accessing timely diagnosis and treatment. - **Insurance Coverage Issues**: Barriers in accessing new treatments due to insurance classification as cosmetic. - **Healthcare Inequities**: Limited access to genetic testing and healthcare resources exacerbating disparities in rare disease diagnosis and treatment. - **Data Privacy in AI**: Ensuring patient data is not misused in AI training and maintaining trust in healthcare technologies. - **Health Disparities**: The rejection of legislation aimed at addressing social determinants of health, which could perpetuate health inequities. - **Healthcare Workforce Issues**: Economic pressures and workforce challenges necessitating adaptive leadership in healthcare. - **Representation in Clinical Trials**: Historical data lacks diversity, leading to imbalances in patient populations, which is a concern for developing safe and effective medicines. - **Data Privacy Issues**: As healthcare technology evolves, concerns about data privacy and security remain paramount. - **Patient Recruitment in Clinical Trials**: Less than 10% of cancer patients participate in trials, highlighting the need for improved recruitment strategies. - **Misinformation and Trust**: Declining public trust in medical science exacerbated by misinformation, impacting patient engagement and health outcomes.