Thomas Scott Hughes, PhD

🎉 New Report Published: Secondary Use of Health Data in Nordic Cooperation The VALO team is excited to share our new report, "Secondary Use of Health Data in Nordic Cooperation". This analysis explores the current state of secondary health data use across the Nordic region, highlighting our shared strengths, challenges, and transformative opportunities. 🌍 Why the Nordics Lead in Health Data The Nordic region is uniquely positioned as a global leader in health data, thanks to (e.g.): 👉 Comprehensive population-based health registries 👉 Unique personal identification numbers (PINs) for secure data linkage Yet, challenges remain that hinder seamless cooperation and data sharing. 💡 Why This Matters Better health data sharing can transform healthcare and research. For example, combining data from 27 million people across the region could accelerate rare disease diagnoses, enhance research, and advance precision medicine. As we prepare for the European Health Data Space (EHDS), this report marks a vital step toward a stronger, more unified Nordic approach to health data utilization. #HealthData #VALOProject #EHDS #SecondaryData

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💡 Vilcek Prizewinner and Whitehead Institute Director Ruth Lehmann spoke at a launch event for a new interdisciplinary program at the Massachusetts Institute of Technology (MIT)—the MIT Health and Life Sciences Collaborative—MIT HEALS. The institute will bring together researchers from across the Institute to deliver health care solutions at scale. During a panel last week, Lehmann outlined several interdisciplinary projects underway at the MIT Koch Institute for Integrative Cancer Research and the Whitehead Institute, including the use of artificial intelligence to analyze mammograms for cancer detection, using genetics to engineer drought-resistant plants, and using #CRISPR technologies to identify genes involved in toxoplasmosis infection. Born in Germany, Lehmann received The Vilcek Foundation Prize in Biomedical Science in 2021 for her pioneering research contributions on germ cells in developmental biology, and for her organizational leadership with NYU and MIT. 🔗 Read more about MIT HEALS at MIT at the following link: https://lnkd.in/enYfHwVi #BiomedicalScience #BreastCancerResearch #CancerResearch #HealthResearch #MassachusettsInstituteofTechnology #MIT #WhiteheadInstitute #WomeninScience #WomeninSTEM

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Announcing the launch of Aalborg University's new Health Mission! In this mission, we seek to improve the health of patients by bringing together researchers across disciplines and external partners across sectors to find solutions to the challenges in the healthcare system and create better patient pathways with digital technology. Our goal is to develop technological solutions that better match patient needs. The mission will lay the foundation for a health system that is more resilient to both current and future challenges. Reach out if interested to learn more! What is unique about the AAU Health Mission? In the AAU Health Mission, we have a sharp patient focus and work directly in line with the Danish government's health reform. Aalborg University's strong interdisciplinary research competencies in ethical and user-friendly AI, sensors, robotics and health data enable us to translate research into practice. Our experience in developing innovative solutions for the healthcare sector makes us one of the driving forces in realizing the mission's ambitions. As per the excellent mission leader Michael Skovdal Rathleff: "Overall, it is our ambition to create better coherence in patient pathways and adapt the treatment to the individual patient's needs. I look forward to working with the mission management; Michael Skovdal Rathleff, Ninna Meier, and John Rasmussen, and any of you that might be interested. We will host meetings and events which we hope will pave the way for sustainable partnerships and strong mission projects.   Learn more about the AAU Health Mission in this article: https://lnkd.in/d7FYgQS8 or contact:   Michael Skovdal Rathleff Professor, Mission Manager E-mail: [email protected] or   Hans Henrik Lomholt Senior Mission Officer E-mail: [email protected]  

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Why do health innovation projects in the Bergen-region often fail? We have an excellent healthcare system and some of the most highly skilled professionals. Bergen also hosts a strong academic community, with universities, medical colleges, and research institutions all contributing to numerous medical research projects. Yet, despite this, we rarely see successful commercialization and new companies. Why does this happen, and what can we do to change it? Bergen Næringsråd and EY recently teamed up to investigate what can be done to improve this situation. Their report has some great insights, and I’m fully on board with the idea of establishing a health hub for knowledge transfer, as well as creating an “industrial engine” to power the community. With 18 years of experience in the international medical device industry—working with companies like NordicNeuroLab and Holberg EEG, which are now considered success stories—I’ve encountered just about every challenge a medical start-up faces. I’ve made all the mistakes you can think of, and I view that experience as an asset that I’d love to share. Over the next two weeks, I’ll be sharing my top four reasons why I believe health innovations in Bergen struggle to succeed. Here are the headlines: 1.     Regulatory expertise is non-negotiable Hire a Regulatory Manager and keep them close. Building strong regulatory competence is key to speeding up time to market, saving costs, and ensuring you create safe, valuable products. This should be your first hire!   2.     The academic mindset Academics often focus on publishing their research while pursuing their Master’s or PhD. Commercialization isn’t their goal, and they do not develop in line with medical regulations. This can lead to commercialization delays, higher costs, and greater risk.   3.     Is this idea worth pursuing? Not every idea should lead to a medical start-up. Do you know how much it costs to bring a medical device to market? If the answer is no, then maybe think twice before jumping in.   4.     You guessed it, MONEY. For the first five years of your medical start-up, your focus won’t be building a great team, developing and selling great products—it’ll be raising capital. Bringing even the simplest medical device to market will cost you 100 million NOK, so you need a rock-solid business case. Stay tuned for more!

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I'm delighted to share our new paper on digital health literacy among young people in Norway. The first unidimensional scale measuring digital health literacy (HLS19-DIGI) has been validated for use in this target group. This study provides useful empirical insights that are important for further adaptation of digital health information to improve adolescents’ abilities to navigate in and between health systems and health services. #healthliteracy #digitalhealthliteracy Diane Levin-Zamir Hanne Søberg Finbråten Øystein Guttersrud

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"Breaking News: Declaration of Helsinki 2024! The landmark document guiding medical research ethics has just been updated! Declaration of Helsinki adopted date October 2024 What's new in it : - Volunteers are now recognized as PARTNERS in research, not just subjects! - Stronger protection for vulnerable groups - Clearer informed consent - More transparency in research - Guidance on ethical use of Artificial Intelligence (AI) in research! These changes put patients and participants first and pave the way for responsible AI innovation! Share your thoughts and opinions!! Read the full update: https://lnkd.in/dVGefpiq Join the conversation: #DeclarationOfHelsinki #ResearchEthics #PatientCentered #MedicalBreakthroughs #HealthcareInnovation #AIinResearch #ResponsibleAI"

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Eva Hellström Lindberg wants to improve survival and quality of life for patients suffering from myelodysplastic syndromes (MDS), a group of blood cancers. Her research aims to add to our biological understanding of the diseases, thereby resulting in fewer relapses from treatment and potential new therapies. MDS patients often have mutations in the DNA of their blood-forming stem cells. A clinical study initiated by Hellström Lindberg during her first stint as a Wallenberg Clinical Scholar showed it is possible to produce person-specific markers that reveal whether the patient still has mutated DNA after the transplant. This is called “measurable residual disease” (MRD). “MRD markers can predict relapse on average eighty days before detection using the usual clinical methods. This opens a window for doctors to begin treatment earlier. We’re now testing to see whether this results in fewer relapses.” https://lnkd.in/gDJU7edp #Research #MDS #bloodcancer Karolinska Institutet Eva Hellstrom-Lindberg

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Eva Hellström Lindberg wants to improve survival and quality of life for patients suffering from myelodysplastic syndromes (MDS), a group of blood cancers. Her research aims to add to our biological understanding of the diseases, thereby resulting in fewer relapses from treatment and potential new therapies. MDS patients often have mutations in the DNA of their blood-forming stem cells. A clinical study initiated by Hellström Lindberg during her first stint as a Wallenberg Clinical Scholar showed it is possible to produce person-specific markers that reveal whether the patient still has mutated DNA after the transplant. This is called “measurable residual disease” (MRD). “MRD markers can predict relapse on average eighty days before detection using the usual clinical methods. This opens a window for doctors to begin treatment earlier. We’re now testing to see whether this results in fewer relapses.” https://lnkd.in/gDJU7edp #Research #MDS #bloodcancer Karolinska Institutet Eva Hellstrom-Lindberg

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New study from our team on a current drug safety topic: GLP1 receptor agonists and risk of suicide

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Today, BioInnovation Institute (BII) hosted the launch of a formal collaboration agreement between nine of the largest foundations in Denmark to strengthen entrepreneurial ecosystems. The collaboration was initiated by the Danish government as part of its entrepreneurship strategy, which was presented in June and stated that it was essential to further boost the conditions for entrepreneurs and innovation in Denmark. At BII, we see plenty of opportunities to initiate dialogue, collaborations, and partnerships with foundations to support entrepreneurship and innovation within, for example, some of Denmark's key focus areas, such as life science, biosolutions, and quantum technology. Just a month ago, we announced a collaboration with the Villum Fonden to support Power-to-X projects from the VILLUM-P2X-Accelerator’ at DTU - Technical University of Denmark. This joint effort is one example of how BII, the foundations, the industry, and the universities can be critical drivers for strengthening Denmark’s position as an innovation powerhouse within sectors and technologies of interest. We look forward to adding many more of these fruitful collaborations in the future. Morten Bødskov Ministry of Industry, Business and Financial Affairs Ministry of Higher Education and Science Christina Egelund Den Danske Maritime Fond Industriens Fond Novo Nordisk Foundation Bitten & Mads Clausens Foundation Grundfos Foundation | PDJF Odense Robotics VELUX FONDEN Pui Ling Lau Lars Bo Nielsen Thomas Bjørnholm Mads Krogsgaard Thomsen Thomas Hofman-Bang, Lene Skole Christian E. Elling Mikkel Bülow Skovborg Steffen Pierini Lüders Lotte G. Lundberg Lars Tveen Kim Nøhr Skibsted Mikkel Christoffersen Troels Oliver Vilms Pedersen Ane Hendriksen

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Great chance to delve into something particularly relevant and timely in our societies, with ageing population and in dire need of radical innovation, namely supporting sustainability transitions through co-creation in health and social services. #socialinnovation #cocreation #sustianabilitytransition

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I have spent some great days at ERA conference 2024 in Stockholm, by e.g. talking to colleagues, nephrologists, societies and listened into great talks to get the newest updates on chronic kidney disease. ->Maybe you did not know about chronic kidney disease. CKD.. - is worldwide extremely common: 844 million patients in 2017 - 1 in 10 people in the general population have CKD and - by 2040 will be ranked as 5th important disease for death - 9 out of 10 persons with CKD did not know they had the disease - 7-10 million patients need treatment every year -> 2.5m receive it everyone else dies - is the only Non-Communicational Disease with rising year-on-year mortality - CKD awareness in public: the news does not reflect what humans die from – in the media especially they focus on terrorism, homicide and suicide and less info about drug overdose, heart disease or kidney disease - the disease gets diagnosed by far too late   -> Highlight (-> for patients) FLOW key results (e.g.24% risk reduction for occurrence of major kidney event and 20% lower risk of overall death -> and the need for further research on effect of combining the now available therapies (SGLT2, GLP1 RA, NS-MRAs, RAS Blockers)   -> Take away -Barriers to appropriate medication prescribing and use in CKD -> Trust in healthcare system, burnout of clinicians, socio economic (Low-Middel Income countries), not aligned or missing guidelines, lack of CKD policies and drug prices -What it takes to address the pandemic, e.g.: 1.      Improved access to care 2.      Better prevention 3.      Greater awareness and education 4.      Increased funding for R&D 5.      Increased screening and diagnosing 6.      Multidisciplinary care teams needed to optimize care for patients 7.      Educating patients on their diagnosis is key for stimulating engagement in their kidney health - Due to the importance, CKD should become a priority topic for World Health Organization to create awareness and the good thing is.. .. Digital Health solutions can support to solve the pandemic by, e.g early diagnosis and screening of patients through EHR data, AI algorythms and analysis of lab reports, telemedicine (Doctor to Doctor education), home tesing etc  #ERA24 #CKD #chronickidneydisease #digitalhealth

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UPPSALA REPORTS – April 2024 The latest issue of Uppsala Reports is all about communications – how we use public communication channels to gain further insight into the patient experience, but also how we communicate to our patients, as well as the public: • Read more on using social media in pharmacovigilance • Get new ideas on how to conduct a successful campaign from our seasoned #MedSafetyWeek campaigners • Hear more on the status of pharmacovigilance of herbals • Learn where we may be going wrong with risk communication to patients, and what can be done about it Read more @ https://lnkd.in/dtTrxB3a

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New publication! Irene Muli has led the work analyzing Swedish patients use and non-use of their patient-accessible electronic health records (PAEHRs). The data was collected between October 2020 and May 2021, and patients were recruited from a mix of physical primary care centers in Region Stockholm and online healthcare providers. 3421 respondents were included in the study. The majority of participants were aware that they could read the PAEHR (86%) and among those aware, 77% had read it. The odds of reading decreased with increased age, unfavourable opinion of PAEHR, low information literacy, and being single. Access to a smartphone increased the probability of reading. Participants who had read their PAEHR had commonly read it to get an overview of their health and care (65%) and to follow up on a healthcare visit (55%). Participants who had not read their PAEHR stated generally that they did not need to (63%) and/or had received sufficient information from their providers (38%). Åsa Cajander Ylva Trolle Lagerros Daniel Söderberg Marina Taloyan Helena Hvitfeldt Nasim Bergman Farrokhnia https://lnkd.in/drEcZxbx

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If you have not read about it yet: here is one noteworthy update on AI in Denmark Nadia Carlsten, PhD has been appointed the CEO of DCAI (Danish Center for AI Innovation) and will lead development of Denmark's first AI supercomputer to solving global impact critical challenges in areas such as: - life science(incl. healthcare) - quantum - green transition It will be tremendously exciting to follow their progress! #ai

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The Vital Role of Clinical Trials in Norway’s Health Industry Clinical trials are the backbone of medical innovation, offering early access to groundbreaking treatments and driving advancements in healthcare. In Norway, the importance of a robust clinical trial ecosystem cannot be overstated. These trials not only provide patients with cutting-edge therapies but also contribute significantly to our healthcare system’s revenue and the overall economy. However, the latest EFPIA report highlights a pressing challenge: Europe, including Norway, is losing its competitive edge in attracting clinical trials. Factors such as regulatory complexities and slower patient recruitment times are contributing to this decline. To sustain and grow our health industry, it’s crucial to streamline regulatory processes and enhance patient recruitment strategies. By addressing these challenges, we can ensure that Norway remains at the forefront of medical research and continues to deliver innovative healthcare solutions to patients both locally and globally. #HealthcareInnovation #ClinicalTrials #NorwayHealth #MedicalResearch #EFPIA The EFPIA report : https://lnkd.in/dfx6PXmv Jannik Grodt Schmidt Tone Varslot Stave John Vislosky, MBA Zacharias Duus Holm, MD Maria Cathrine Lundstad Aulie Monica Larsen Ervin Alic

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🌍 Digital Health Pioneers: Sweden’s Remote North 🌍 Sweden’s northern regions are setting an inspiring example of how digital health can transform access to care in remote areas. Through innovative telemedicine services and a patient-centered approach, they’ve made healthcare more accessible and effective—even in hard-to-reach places. Sofie's story shows how technology bridges gaps and brings critical care closer to communities. 📖 Read more about this digital health journey: https://lnkd.in/dtVVKN_y #DigitalHealth #Telemedicine #HealthcareInnovation

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