How can patient organisations collect better data to support their advocacy efforts?
09.04.2025 15:17 β π 0 π 0 π¬ 0 π 0@dataforequity.bsky.social
Driving health equity through data democratisation and patient advocacy. Specialist in transforming health systems by empowering patient organisations, advancing #GlobalHealth priorities, and leveraging real-world data for impactful change #PatientAdvocacy
How can patient organisations collect better data to support their advocacy efforts?
09.04.2025 15:17 β π 0 π 0 π¬ 0 π 0How does embedding patient-generated data into training sets for clinical AI algorithms foster transparent, trustworthy, and ethically grounded healthcare innovation that authentically addresses patient priorities? #healthequity #patientadvocacy #livedexperience #publichealth #datastrategy
12.12.2024 20:15 β π 0 π 0 π¬ 0 π 0How can open, patient-owned data ecosystems create new standards for interpretability and accountability in AI-driven healthcare, ensuring that key opinion leaders respond to transparent, lived-experience-based evidence?
12.12.2024 20:14 β π 2 π 0 π¬ 0 π 0How can patient-powered data pipelines, aggregating lived experiences, challenge entrenched hierarchies and force AI-driven healthcare to adopt patient-centred, ethically grounded transformation?
12.12.2024 20:13 β π 0 π 0 π¬ 1 π 0Advocacy without results? Tracking KPIs, integrating PROs, and building networks reveal gaps in care, enabling real-time solutions and #accountability. Without measuring outcomes, are we solving systemic barriers or just treating symptoms? #Transparency #GlobalHealth #PatientAdvocacy #HealthEquity
26.11.2024 20:15 β π 0 π 0 π¬ 0 π 0Fragmented resources = lost opportunities. Digital dashboards, stakeholder alignment, and scalability planning empower #PatientOrganisations for better outcomes. Are patients truly prioritised in policy, or just an afterthought? #HealthInnovation #PatientCentricity #DataForGood
26.11.2024 20:12 β π 0 π 0 π¬ 1 π 0Why accept policy gaps when tailored advocacy can drive real change? Digital tools and evidence-based strategies align health systems for sustainable impact. Are decision-makers accountable to patient needs or external pressures? #GlobalHealth #DataDrivenAdvocacy #HealthEquity
26.11.2024 20:11 β π 0 π 0 π¬ 1 π 0Can advocacy succeed without data? Stakeholder mapping, bottleneck analysis, and real-time tracking turn fragmented systems into scalable, patient-first solutions. Are we empowering voices on the ground or just filling gaps? #HealthEquity #PatientAdvocacy #DataDrivenChange
26.11.2024 20:09 β π 0 π 0 π¬ 1 π 0How can we ensure PROs fulfil their potential in LMICs? By leveraging mobile tech, adapting culturally relevant tools, supporting health systems & orgs with resources, strengthening data privacy laws, and using PRO insights for advocacy. #GlobalHealth #PatientCentricity #EquityInHealth #DataForGood
26.11.2024 20:02 β π 0 π 0 π¬ 0 π 0Hey weβd love to be added please!
26.11.2024 19:53 β π 0 π 0 π¬ 0 π 0How do we integrate patient/citizen voices as dynamic, real-time data streams, moving beyond retrospective anecdotes to drive more relevant health decisions? #HealthTech #PatientCentricity #DataDrivenHealthcare
26.11.2024 00:30 β π 2 π 0 π¬ 0 π 0How can we update the βinterfaceβ in which lived experience is embedded into learning health systems? #LivedExperience #PatientEngagement #HealthEquity #LearningHealthSystems
26.11.2024 00:26 β π 2 π 0 π¬ 1 π 0Data-driven advocacy is a process: engage stakeholders, map data landscapes, tackle gaps in quality and access, and integrate diverse sources using FAIR principles. This journey transforms raw data into actionable insights, improving #research, care, and #equity. #PublicHealth #AdvocacyInAction
25.11.2024 00:01 β π 1 π 1 π¬ 1 π 0Privacy-preserving federated learning trains AI across institutions, empowering healthcare innovation. But without diverse, representative data, does it risk reinforcing disparities? Advocacy for inclusive datasets is essential. #DigitalHealth #EquityInAI #HealthEquity #DataDrivenAdvocacy
24.11.2024 23:53 β π 0 π 0 π¬ 0 π 0Decentralised health data empowers patients with control, but does it widen the digital divide for underserved populations? Can blockchain deliver true equity in #DigitalHealth, or are we creating new disparities? #HealthTech
24.11.2024 23:46 β π 0 π 0 π¬ 0 π 0Future precision health ecosystems powered by DBx will integrate multimodal data (EHR, wearables, βomics) for hyper-personalised care, predictive AI, and real-time monitoring. Challenges: bias, interoperability, ethics. Can we ensure equity, trust & sustainability at this scale? #HealthEquity
24.11.2024 23:41 β π 1 π 0 π¬ 0 π 0How can we harness digital biomarkers for health equity? Wearables promise transformative care, yet data gaps risk widening inequalities. Diverse datasets & ethical use are key to equity in AI-driven health. Are we asking the right questions about access, accuracy & inclusivity? #HealthData #Equity
24.11.2024 19:48 β π 2 π 2 π¬ 0 π 0How can patient-reported outcomes integrated with clinical data reshape diagnostics, treatment, and health equity? The future of healthcare lies in scalable, patient-centric platforms driving precision medicine, equitable access, and transformative insights. #DataForGood #EquityInHealth
24.11.2024 09:19 β π 3 π 0 π¬ 0 π 0How can we democratise health records to empower vulnerable populations? Could accessible, patient-owned data drive equity, better outcomes, and trust? What role do tech and policy play in breaking barriers? Thoughts? #HealthEquity #DataDemocracy #PatientEmpowerment #GlobalHealth
24.11.2024 09:14 β π 5 π 1 π¬ 1 π 0How can AI amplify lived experiences to drive global public health advocacy? What happens when data becomes a tool for equity, empowering real stories to shape solutions? Letβs reimagine health systems built by those they serve. Whatβs your take? #AI #LivedExperience #GlobalHealth #DataAdvocacy
24.11.2024 09:09 β π 1 π 1 π¬ 0 π 0Engaging marginalised patient groups is key to inclusive healthcare. Barriers like language, discrimination, and financial challenges hinder participation. Inclusive systems improve outcomes and ensure all voices shape healthcare decisions. #HealthForAll
23.11.2024 22:18 β π 0 π 0 π¬ 0 π 0Did you know that in some cities, life expectancy can vary by 20 years between neighborhoods just miles apart? π Data is a powerful tool that illuminates these hidden disparities, exposing unmet needs in health equity.
#DataForEquity #HealthEquity #UnmetNeeds #PatientVoices #GlobalHealth
Hello, Bluesky community! Excited to launch @dataforequity βa space dedicated to democratising data on lived experiences to transform global public health. Join us on this journey towards equitable and impactful health solutions. #HealthEquity #DataStrategy
23.11.2024 14:26 β π 2 π 0 π¬ 0 π 0