Welcome to the age of cognitive computing: where intelligent machines have
moved from the realms of science fiction to the present day. This groundbreaking
technology is driving advanced discoveries and allowing improved decision-making –
resulting in better patient care
Big Data Provides Opportunities, Challenges and a Better Future in Health and...Cirdan
This presentation was delivered by Ashraf Mina, NSW Pathology at the Pathology Horizons 2017 Conference in Cairns, Australia.
Pathology Horizons 2017 is an annual CPD conference organised by Cirdan on the future of pathology. You can access more information about the event at www.pathologyhorizons.com
The company was founded in 2010 and is headquartered in Lisburn, Northern Ireland and has additional offices in Canada and Australia.
Cirdan is also responsible for organising Pathology Horizons, an annual and open CPD conference on the future of pathology. For more information visit - www.pathologyhorizons.com
Trusted! Quest for data-driven and fair health solutions Sitra / Hyvinvointi
An inspiring online event on 3 February 2021. We are discussing the future of data-driven health solutions that focus on fairness for all stakeholders: people, business and the public sector. We are asking questions such as: What is fairness in health? What role does trust play in data-driven health services? What needs to change and who needs to act? Most of all, we are launching “The Fair Health Data Challenge“.
Event speakers:
- Jaana Sinipuro, Project Director, IHAN – Human-driven data economy, Sitra
- Dipak Kalra, President, The European Institute for Innovation through Health Data (i~HD)
- Pekka Kahri, Technology Officer, HUS Helsinki University Hospital
- Markus Kalliola, Project Director, Health data 2030, Sitra
- Tiina Härkönen, Leading Specialist, Sitra
Unprecedented Technological Trends Push the Envelope in Life SciencesCognizant
The life sciences and pharmaceuticals industry is facing startling digitizational changes on many levels, with these five key technology trends setting the pace: bundling products and services, edge analytics, human augmentation, automation and AI, and patient data ownership.
A look at the key trends and challenges in applying Big Data to transform healthcare by supporting research, self care, providers and building ecosystems. Purchase the report here: https://gumroad.com/l/PlXP
2016 IBM Interconnect - medical devices transformationElizabeth Koumpan
Emerging technologies such as Internet of Things, 3D Printing are driving the creation of new business models and forcing the Industry for transformation. The product centric model where the Industry main objective was to develop the device, is moving to software and services model, with the focus on Big Data & Analytics, Integration and Cloud.
The maturation of technologies such as social, mobile, analytics, cloud, 3D printing, bio- and nanotechnology are rapidly shifting the competitive landscape. These emerging technologies create an environment that is connected and open, simple and intelligent, fast and scalable. Organizations must embrace disruptive technologies to drive innovation
Welcome to the age of cognitive computing: where intelligent machines have
moved from the realms of science fiction to the present day. This groundbreaking
technology is driving advanced discoveries and allowing improved decision-making –
resulting in better patient care
Big Data Provides Opportunities, Challenges and a Better Future in Health and...Cirdan
This presentation was delivered by Ashraf Mina, NSW Pathology at the Pathology Horizons 2017 Conference in Cairns, Australia.
Pathology Horizons 2017 is an annual CPD conference organised by Cirdan on the future of pathology. You can access more information about the event at www.pathologyhorizons.com
The company was founded in 2010 and is headquartered in Lisburn, Northern Ireland and has additional offices in Canada and Australia.
Cirdan is also responsible for organising Pathology Horizons, an annual and open CPD conference on the future of pathology. For more information visit - www.pathologyhorizons.com
Trusted! Quest for data-driven and fair health solutions Sitra / Hyvinvointi
An inspiring online event on 3 February 2021. We are discussing the future of data-driven health solutions that focus on fairness for all stakeholders: people, business and the public sector. We are asking questions such as: What is fairness in health? What role does trust play in data-driven health services? What needs to change and who needs to act? Most of all, we are launching “The Fair Health Data Challenge“.
Event speakers:
- Jaana Sinipuro, Project Director, IHAN – Human-driven data economy, Sitra
- Dipak Kalra, President, The European Institute for Innovation through Health Data (i~HD)
- Pekka Kahri, Technology Officer, HUS Helsinki University Hospital
- Markus Kalliola, Project Director, Health data 2030, Sitra
- Tiina Härkönen, Leading Specialist, Sitra
Unprecedented Technological Trends Push the Envelope in Life SciencesCognizant
The life sciences and pharmaceuticals industry is facing startling digitizational changes on many levels, with these five key technology trends setting the pace: bundling products and services, edge analytics, human augmentation, automation and AI, and patient data ownership.
A look at the key trends and challenges in applying Big Data to transform healthcare by supporting research, self care, providers and building ecosystems. Purchase the report here: https://gumroad.com/l/PlXP
2016 IBM Interconnect - medical devices transformationElizabeth Koumpan
Emerging technologies such as Internet of Things, 3D Printing are driving the creation of new business models and forcing the Industry for transformation. The product centric model where the Industry main objective was to develop the device, is moving to software and services model, with the focus on Big Data & Analytics, Integration and Cloud.
The maturation of technologies such as social, mobile, analytics, cloud, 3D printing, bio- and nanotechnology are rapidly shifting the competitive landscape. These emerging technologies create an environment that is connected and open, simple and intelligent, fast and scalable. Organizations must embrace disruptive technologies to drive innovation
From personal health data to a personalized adviceWessel Kraaij
Invited talk at the health track of ICT.OPEN 2018, 20-3-2018
1. Related Data science challenges to Digital Health trends
2. Designing an infrastructure to support secure learning from distributed health data repositories, for personalized health advice
3. Supporting patients with rare diseases with patient driven research and the generation of new hypotheses based on patient experiences.
Patient-Focused Data Science: Machine Learning for Complex Diseases (AIM203-S...Amazon Web Services
Curious about how Amazon machine learning (ML) services can enable healthcare organizations to find the insights they need to survive and thrive? Join us to learn how Takeda researchers built and trained their own disease-specific ML models, including deep-learning models using Deloitte ConvergeHEALTH running on AWS to simulate and quantify the overall disease burden and identify potential risks. This session is brought to you by AWS partner, Deloitte Consulting LLP.
Opening Keynote: The Convergence of mHealth: A Consumer and Clinical Perspective
Description: In the opening keynote attendees will hear an overview from a current HIMSS mHealth Community Member which sets the stage for discussion. The keynote will highlight facts and figures which support the thesis of increased utilization of mobile and wireless technologies by healthcare providers. The keynote will also set the stage with current issues impacting the continued adoption.
Speaker(s): Ahmed Albaiti
Objectives: Assess the current landscape of mHealth. Illustrate the roles of consumers and patients. Define the current issues.
The Role Of Data and Emergent Technologies In Managing Health IFAH
Joanna Taylor, Partner - Advisory Markets & Life Sciences, Ernst & Young AG on the topic of 'The Role Of Data and Emergent Technologies In Managing Health ' at IFAH held at Le Meridien, Dubai on 16th - 18th December, 2019.
The convergence of separate health systems has led to
a great increase in data, which some organisations are
struggling to get to grips with. Harnessing analytic tools
and sharing knowledge is the best way forward
Healthcare is currently undergoing a transformational metamorphosis. A new era of patient care that is more effective, precise, and patient-centered has arrived because of technological advancements.
Wake up Pharma and look into your Big data Yigal Aviv
The vast volumes of medical data collected offers pharma the opportunity to harness the information in big data sets
Unlocking the potential in these data sources can ultimately lead to improved patients outcomes
This presentation describes consideration how to maximize the impact of Big Data.
its methodology, practical challenges and implications.
Digital Pharma: Evolution and Revolution in Marketing & SalesLen Starnes
A review for non-pharma audiences of evolutionary and revolutionary changes in pharma marketing and sales since the mid 90s. Presented at ENG's Effective Web Marketing and Search Engine Marketing conference, Brussels, November, 2007.
Benefits of Big Data in Health Care A Revolutionijtsrd
Lifespan of a normal human is increasing with the world population and it produces new challenge in health care. big data change the method of data management ,leverage data and analyzing data.with the help of big data we can reduces the costs of treatment, reducing medication and provide better treatment with predictive analytics. Health related data collected from various sources like electronic health record EHR ,medical imaging system, genomic sequencing, pay of records, pharmaceutical research , and medical devices, etc. are refers to as big data in healthcare. Dr. Ritushree Narayan ""Benefits of Big Data in Health Care: A Revolution"" Published in International Journal of Trend in Scientific Research and Development (ijtsrd), ISSN: 2456-6470, Volume-3 | Issue-3 , April 2019, URL: https://www.ijtsrd.com/papers/ijtsrd22974.pdf
Paper URL: https://www.ijtsrd.com/computer-science/data-miining/22974/benefits-of-big-data-in-health-care-a-revolution/dr-ritushree-narayan
Artificial intelligence in healthcare quality and its impact by Dr.Mahboob al...Healthcare consultant
Artificial intelligence (AI) has enormous potential to improve the safety of healthcare, from increasing diagnostic accuracy, to optimising treatment planning, to forecasting outcomes of care.However, integrating AI technologies into the delivery of healthcare is likely to introduce a range of new risks and amplify ...
Artificial intelligence (AI) has numerous applications for the healthcare industry. Machine learning, natural language processing, and robotics can predict an individual's risk of contracting HIV, assess a patient’s risk of inpatient violence, and assist in surgeries.
Big data in the real world opportunities and challenges facing healthcare -...Leo Barella
The Healthcare system will be target of major disruption more than any other industry in the next 10 years.
The Digital economics and increasing demand by consumers for more real time information in order to make better decisions on who they want to "hire" to perform services for them or in their behalf will be the driver of this disruption. Analytics, Big Data and Machine Learning will lay the foundation for the next generation of healthcare yet there are still many challenges to truly revolutionize the healthcare system end to end (Providers, Pharma, Payers)
Artificial Intelligence in PharmacovigilanceClinosolIndia
The integration of Artificial Intelligence (AI) into pharmacovigilance has emerged as a transformative force, revolutionizing the monitoring and assessment of drug safety. This article provides a comprehensive overview of the application of AI in pharmacovigilance, elucidating its impact on the identification, evaluation, and management of adverse drug reactions (ADRs). AI-driven algorithms, machine learning, and natural language processing empower automated signal detection, enabling more efficient and proactive risk assessment. The review explores the utilization of AI in mining diverse data sources, including electronic health records, social media, and scientific literature, to enhance the sensitivity and specificity of ADR detection. Additionally, the article delves into the role of AI in streamlining case processing, automating data validation, and facilitating trend analysis, thereby optimizing the pharmacovigilance workflow. Challenges, such as data quality and interpretability of AI-generated insights, are critically examined, alongside ongoing efforts to address these concerns. The regulatory landscape and the incorporation of AI technologies into pharmacovigilance guidelines are discussed, highlighting the evolving framework for ensuring patient safety. As AI continues to evolve, its synergy with traditional pharmacovigilance practices opens new avenues for enhanced surveillance and proactive risk management in the dynamic field of drug safety.
Healthcare data and its impact upon the patient care decision process via accurate, real-time, reliable data from disparate sources is creating a digital health revolution. Data-driven healthcare is beginning to have a huge impact addressing the challenges of every provider, through efficient handling of huge volumes of patient care data.
Providers need to move towards real-time analytics that have become critical to demonstrate their quality of care, as reimbursement by government programs can be contingent upon how providers are measured in “Quality of Care”. For example, the Medicare Access and CHIP Reauthorization Act (MACRA) of 2015, also called the Permanent Doc Fix, changes the way Medicare doctors are reimbursed with the implementation of a merit based incentive. The performance-based pressure is huge, which makes it imperative that every provider consider technology solutions. Read more at https://www.solix.com/solutions/data-driven-solutions/healthcare/
Precision Algorithms in Healthcare: Improving treatments with AIDay1 Technologies
It’s 2020 and we can safely say that the year hasn’t been our best or what we wanted it to be like. The alarming spread of COVID-19, and its aftermath has people unrooted and shaken to their toes, and literally everyone is looking at technology and healthcare innovations to find an answer to the pandemic. And fast.
From personal health data to a personalized adviceWessel Kraaij
Invited talk at the health track of ICT.OPEN 2018, 20-3-2018
1. Related Data science challenges to Digital Health trends
2. Designing an infrastructure to support secure learning from distributed health data repositories, for personalized health advice
3. Supporting patients with rare diseases with patient driven research and the generation of new hypotheses based on patient experiences.
Patient-Focused Data Science: Machine Learning for Complex Diseases (AIM203-S...Amazon Web Services
Curious about how Amazon machine learning (ML) services can enable healthcare organizations to find the insights they need to survive and thrive? Join us to learn how Takeda researchers built and trained their own disease-specific ML models, including deep-learning models using Deloitte ConvergeHEALTH running on AWS to simulate and quantify the overall disease burden and identify potential risks. This session is brought to you by AWS partner, Deloitte Consulting LLP.
Opening Keynote: The Convergence of mHealth: A Consumer and Clinical Perspective
Description: In the opening keynote attendees will hear an overview from a current HIMSS mHealth Community Member which sets the stage for discussion. The keynote will highlight facts and figures which support the thesis of increased utilization of mobile and wireless technologies by healthcare providers. The keynote will also set the stage with current issues impacting the continued adoption.
Speaker(s): Ahmed Albaiti
Objectives: Assess the current landscape of mHealth. Illustrate the roles of consumers and patients. Define the current issues.
The Role Of Data and Emergent Technologies In Managing Health IFAH
Joanna Taylor, Partner - Advisory Markets & Life Sciences, Ernst & Young AG on the topic of 'The Role Of Data and Emergent Technologies In Managing Health ' at IFAH held at Le Meridien, Dubai on 16th - 18th December, 2019.
The convergence of separate health systems has led to
a great increase in data, which some organisations are
struggling to get to grips with. Harnessing analytic tools
and sharing knowledge is the best way forward
Healthcare is currently undergoing a transformational metamorphosis. A new era of patient care that is more effective, precise, and patient-centered has arrived because of technological advancements.
Wake up Pharma and look into your Big data Yigal Aviv
The vast volumes of medical data collected offers pharma the opportunity to harness the information in big data sets
Unlocking the potential in these data sources can ultimately lead to improved patients outcomes
This presentation describes consideration how to maximize the impact of Big Data.
its methodology, practical challenges and implications.
Digital Pharma: Evolution and Revolution in Marketing & SalesLen Starnes
A review for non-pharma audiences of evolutionary and revolutionary changes in pharma marketing and sales since the mid 90s. Presented at ENG's Effective Web Marketing and Search Engine Marketing conference, Brussels, November, 2007.
Benefits of Big Data in Health Care A Revolutionijtsrd
Lifespan of a normal human is increasing with the world population and it produces new challenge in health care. big data change the method of data management ,leverage data and analyzing data.with the help of big data we can reduces the costs of treatment, reducing medication and provide better treatment with predictive analytics. Health related data collected from various sources like electronic health record EHR ,medical imaging system, genomic sequencing, pay of records, pharmaceutical research , and medical devices, etc. are refers to as big data in healthcare. Dr. Ritushree Narayan ""Benefits of Big Data in Health Care: A Revolution"" Published in International Journal of Trend in Scientific Research and Development (ijtsrd), ISSN: 2456-6470, Volume-3 | Issue-3 , April 2019, URL: https://www.ijtsrd.com/papers/ijtsrd22974.pdf
Paper URL: https://www.ijtsrd.com/computer-science/data-miining/22974/benefits-of-big-data-in-health-care-a-revolution/dr-ritushree-narayan
Artificial intelligence in healthcare quality and its impact by Dr.Mahboob al...Healthcare consultant
Artificial intelligence (AI) has enormous potential to improve the safety of healthcare, from increasing diagnostic accuracy, to optimising treatment planning, to forecasting outcomes of care.However, integrating AI technologies into the delivery of healthcare is likely to introduce a range of new risks and amplify ...
Artificial intelligence (AI) has numerous applications for the healthcare industry. Machine learning, natural language processing, and robotics can predict an individual's risk of contracting HIV, assess a patient’s risk of inpatient violence, and assist in surgeries.
Big data in the real world opportunities and challenges facing healthcare -...Leo Barella
The Healthcare system will be target of major disruption more than any other industry in the next 10 years.
The Digital economics and increasing demand by consumers for more real time information in order to make better decisions on who they want to "hire" to perform services for them or in their behalf will be the driver of this disruption. Analytics, Big Data and Machine Learning will lay the foundation for the next generation of healthcare yet there are still many challenges to truly revolutionize the healthcare system end to end (Providers, Pharma, Payers)
Artificial Intelligence in PharmacovigilanceClinosolIndia
The integration of Artificial Intelligence (AI) into pharmacovigilance has emerged as a transformative force, revolutionizing the monitoring and assessment of drug safety. This article provides a comprehensive overview of the application of AI in pharmacovigilance, elucidating its impact on the identification, evaluation, and management of adverse drug reactions (ADRs). AI-driven algorithms, machine learning, and natural language processing empower automated signal detection, enabling more efficient and proactive risk assessment. The review explores the utilization of AI in mining diverse data sources, including electronic health records, social media, and scientific literature, to enhance the sensitivity and specificity of ADR detection. Additionally, the article delves into the role of AI in streamlining case processing, automating data validation, and facilitating trend analysis, thereby optimizing the pharmacovigilance workflow. Challenges, such as data quality and interpretability of AI-generated insights, are critically examined, alongside ongoing efforts to address these concerns. The regulatory landscape and the incorporation of AI technologies into pharmacovigilance guidelines are discussed, highlighting the evolving framework for ensuring patient safety. As AI continues to evolve, its synergy with traditional pharmacovigilance practices opens new avenues for enhanced surveillance and proactive risk management in the dynamic field of drug safety.
Healthcare data and its impact upon the patient care decision process via accurate, real-time, reliable data from disparate sources is creating a digital health revolution. Data-driven healthcare is beginning to have a huge impact addressing the challenges of every provider, through efficient handling of huge volumes of patient care data.
Providers need to move towards real-time analytics that have become critical to demonstrate their quality of care, as reimbursement by government programs can be contingent upon how providers are measured in “Quality of Care”. For example, the Medicare Access and CHIP Reauthorization Act (MACRA) of 2015, also called the Permanent Doc Fix, changes the way Medicare doctors are reimbursed with the implementation of a merit based incentive. The performance-based pressure is huge, which makes it imperative that every provider consider technology solutions. Read more at https://www.solix.com/solutions/data-driven-solutions/healthcare/
Precision Algorithms in Healthcare: Improving treatments with AIDay1 Technologies
It’s 2020 and we can safely say that the year hasn’t been our best or what we wanted it to be like. The alarming spread of COVID-19, and its aftermath has people unrooted and shaken to their toes, and literally everyone is looking at technology and healthcare innovations to find an answer to the pandemic. And fast.
Similar to Health data sharing from patients' perspective (20)
Derick Mitchell_Biobanking from the patient perspective.pdfipposi
IPPOSI CEO Derick Mitchell presented the patient perspective on biobanking at the 2023 WECAN Academy for Cancer Patient Advocates on July 2nd, 2023 in Frankfurt, Germany.
Mental Health - Leading the data sharing charge with a rights-based approachipposi
Frankie Prendergast's (Digital Health Applications Programme Manager in St Patrick's Mental Health Services) presentation on health information at the 2023 IPPOSI Conference.
Muiris O'Connor, Assistant Secretary of the Department of Health, presented key government updates on health information at the 2023 IPPOSI Conference Building a Data Sharing Health Sector in Ireland.
Clinical Workflow for Capture of Patient Registry Dataipposi
Clare Harney, Managing Director of HD Health, gave a lightning presentation on managing data for patient registries at the 2023 IPPOSI Conference on Building a Data Sharing Health Sector in Ireland.
EU Clinical Trials Regulation - IPPOSI perspectiveipposi
IPPOSI CEO, Dr Derick Mitchell delivered a presentation on the EU Clinical Trials Regulation from the patients' perspective at the 20th International Conference on Pharmaceutical Medicine, Athens, Greece.
Patient Centricity in Value-based healthcare, Sept 2022ipposi
IPPOSI CEO Derick Mitchell delivered a presentation as part of the RCSI Value Based Healthcare Webinar on Patient Centricity on Sept 18th, 2022.
The Future of Value Based Healthcare in Ireland webinar series is run by The RCSI Healthcare Outcomes Research Centre, Janssen Sciences Ireland UC and Novartis Ireland.
2022 World Day Brain Event - IPPOSI Presentationipposi
Laura Kavanagh, Research and Advocacy Manager in IPPOSI, gave a presentation on World Brain Day 2022 at an event hosted by the Neurological Alliance of Ireland.
In October 2020, IPPOSI published a membership engagement survey on its draft 4-year strategy. This slide deck captures the summary results of the survey.
IPPOSI CEO Derick Mitchell delivered a presentation on Dec 6th 2019 at the Digital health Conference, organised as part of the Royal College of Physicians, Ireland
ZGB - The Role of Generative AI in Government transformation.pdfSaeed Al Dhaheri
This keynote was presented during the the 7th edition of the UAE Hackathon 2024. It highlights the role of AI and Generative AI in addressing government transformation to achieve zero government bureaucracy
A process server is a authorized person for delivering legal documents, such as summons, complaints, subpoenas, and other court papers, to peoples involved in legal proceedings.
Understanding the Challenges of Street ChildrenSERUDS INDIA
By raising awareness, providing support, advocating for change, and offering assistance to children in need, individuals can play a crucial role in improving the lives of street children and helping them realize their full potential
Donate Us
https://serudsindia.org/how-individuals-can-support-street-children-in-india/
#donatefororphan, #donateforhomelesschildren, #childeducation, #ngochildeducation, #donateforeducation, #donationforchildeducation, #sponsorforpoorchild, #sponsororphanage #sponsororphanchild, #donation, #education, #charity, #educationforchild, #seruds, #kurnool, #joyhome
Jennifer Schaus and Associates hosts a complimentary webinar series on The FAR in 2024. Join the webinars on Wednesdays and Fridays at noon, eastern.
Recordings are on YouTube and the company website.
https://www.youtube.com/@jenniferschaus/videos
Many ways to support street children.pptxSERUDS INDIA
By raising awareness, providing support, advocating for change, and offering assistance to children in need, individuals can play a crucial role in improving the lives of street children and helping them realize their full potential
Donate Us
https://serudsindia.org/how-individuals-can-support-street-children-in-india/
#donatefororphan, #donateforhomelesschildren, #childeducation, #ngochildeducation, #donateforeducation, #donationforchildeducation, #sponsorforpoorchild, #sponsororphanage #sponsororphanchild, #donation, #education, #charity, #educationforchild, #seruds, #kurnool, #joyhome
This session provides a comprehensive overview of the latest updates to the Uniform Administrative Requirements, Cost Principles, and Audit Requirements for Federal Awards (commonly known as the Uniform Guidance) outlined in the 2 CFR 200.
With a focus on the 2024 revisions issued by the Office of Management and Budget (OMB), participants will gain insight into the key changes affecting federal grant recipients. The session will delve into critical regulatory updates, providing attendees with the knowledge and tools necessary to navigate and comply with the evolving landscape of federal grant management.
Learning Objectives:
- Understand the rationale behind the 2024 updates to the Uniform Guidance outlined in 2 CFR 200, and their implications for federal grant recipients.
- Identify the key changes and revisions introduced by the Office of Management and Budget (OMB) in the 2024 edition of 2 CFR 200.
- Gain proficiency in applying the updated regulations to ensure compliance with federal grant requirements and avoid potential audit findings.
- Develop strategies for effectively implementing the new guidelines within the grant management processes of their respective organizations, fostering efficiency and accountability in federal grant administration.
Russian anarchist and anti-war movement in the third year of full-scale warAntti Rautiainen
Anarchist group ANA Regensburg hosted my online-presentation on 16th of May 2024, in which I discussed tactics of anti-war activism in Russia, and reasons why the anti-war movement has not been able to make an impact to change the course of events yet. Cases of anarchists repressed for anti-war activities are presented, as well as strategies of support for political prisoners, and modest successes in supporting their struggles.
Thumbnail picture is by MediaZona, you may read their report on anti-war arson attacks in Russia here: https://en.zona.media/article/2022/10/13/burn-map
Links:
Autonomous Action
http://Avtonom.org
Anarchist Black Cross Moscow
http://Avtonom.org/abc
Solidarity Zone
https://t.me/solidarity_zone
Memorial
https://memopzk.org/, https://t.me/pzk_memorial
OVD-Info
https://en.ovdinfo.org/antiwar-ovd-info-guide
RosUznik
https://rosuznik.org/
Uznik Online
http://uznikonline.tilda.ws/
Russian Reader
https://therussianreader.com/
ABC Irkutsk
https://abc38.noblogs.org/
Send mail to prisoners from abroad:
http://Prisonmail.online
YouTube: https://youtu.be/c5nSOdU48O8
Spotify: https://podcasters.spotify.com/pod/show/libertarianlifecoach/episodes/Russian-anarchist-and-anti-war-movement-in-the-third-year-of-full-scale-war-e2k8ai4
1. User-managed access
The solution to sharing data for research and innovation?
Ananda Plate
Executive Director, Patvocates Research
Board Member, Myeloma Patients Europe
Former Chair, WECAN
2. In contrast to healthy citizens, almost all rare disease patients want
to share their data for research – but fear misuse
If given the opportunity, would you be willing to make your/the person you care for health
information available for the purpose of:
97%
Developing
new treatments
for your
disease
97%
Improving
diagnosis for
your disease, or
suspected
disease
90%
Improving
research and
care on
diseases other
than yours
47%
fear risk of data
use in different
context from
where
disclosed
7%
see risk of
becoming victim
of discrimination
37%
would be ready to share data to
develop medicines and
treatments
Patients1
General
population2
(1) Rare disease patients’ perspectives on data sharing and data protection, Courbier et al. Orphanet Journal of Rare Diseases (2019) (2) Attitudes towards data sharing, you Gov. (2018)
3. The GDPR opportunity: (Health) data to the people
Explicit consent for health data: Well-defined purpose, what
data is collected, who collects and processes it
Right to refuse: without detrimental consequence
Right to be forgotten: withdrawal of consent, deletion of data
Right of citizens to access and data portability: obtain
machine readable copies of all their personal data (personal,
shopping, medical, education, etc)
Right to rectification: correction of inaccurate data
Right to object: e.g. to direct marketing
4. Does the way we usually obtain consent
solve the issue?
At average reading speeds of 200 to 250 words per minute (wpm),
reading the terms of service before you agree to download the latest
app or software would take:
Service
Word
count
How many minutes to read?
(at 240 words per minute)
Microsoft 15,260 63.5
Spotify 8,600 35.8
TikTok 7,459 31.4
Zoom 6,891 28.7
Tinder 6,215 25.9
Uber 5,658 23.6
Twitter 5,633 23.5
Source: LePan, Visual capitalist (18 Apr 2020),
https://www.visualcapitalist.com/terms-of-service-visualizing-the-length-of-internet-agreements/
5. Patient organisations are ideal honest brokers
and custodians in data governance
Patient organisations…
are the ideal custodians on data governance (consent management, collection, data management, ownership,
security)
can enable all stakeholders on purposeful research without compromising patients’ privacy, preventing misuse
can ensure that research results are published irrespective of whether results are positive or negative
may even act as a cooperative or patient-led data commons to collect personal data, and agree that their
pseudonymized personal data is shared as a fiduciary with patient advocacy, academic, pharma or healthcare
system research
MIDATA.coop, POSMO.coop and similar data cooperatives as pilots and a model? Adapted from Prof. Ernst Hafen, ETH Zürich (2021)
Data Commons
[Pseudonymized data
of community members]
clinical medical genomic
PRO
sensors geolocation microbiome
preferences
Patient organisation
Clinical
researchers
Healthcare
providers
Industry
Regulators
Payers
Policy
makers
6. Patient-led mobile “registry”:
The “Know your CML” QoL app
Patient experience app, based on self-reported
data
Personal health record, including test results,
quality of life and side effect experience
QoL tracker based on validated EORTC QoL
PROM as well as PRO-CTCAE
Patient can report to physician about observed
toxicity and QoL at next visit
Patient can compare individual experience with
aggregate data of all other app users:
is my side effect rare? How are others doing?
Data can be used for research on real-world QoL
and toxicities
Source: CML Advocates Network, https://www.cmladvocates.net/know-your-cml/
7. Conclusions
In contrast to healthy citizens, almost all patients want to share their data for research – but fear
misuse and discrimination
Managing data and consent is not a purpose or value on its own for individual patients:
There needs to be a direct and personal „return on engagement“ (for their lifetime)
Patient organisations are ideal honest brokers and custodians in data governance and data
management to enable purposeful research, lawful and ethical data use, and publication of
results
Patient organisations can generate robust evidence that benefits individual patients
AND research
Ananda Plate
ananda@patvocates.net