Photo: Maria Yohuang
On November 26, the NEAR and REWHARD infrastructures brought together researchers and stakeholders at Karolinska Institutet for a well-attended symposium on one of the most pressing challenges in research: non-response in cohort and survey studies. After an initial welcome from Debora Rizzuto of NEAR and Martin Hällsten of REWHARD, the symposium featured leading experts who shared the causes, solutions, and practical strategies for overcoming this issue.
The morning session, entitled “Understand the Drop in Response Rate: Causes and Solutions,” was led by Chair Serhiy Dekhtyar, during which Sebastian Lundmark addressed why response rates have declined, how to improve them, and the role of incentives in study participation. This was followed by Dan Hedlin, who spoke about how we can statistically address non-response rates.
Dan Hedlin, Hugo Westerlund, and Sebastian Lundmark. Photo: Maria Yohuang.
The afternoon session addressed experiences with managing non-response in cohort studies and surveys led by Chair Carin Lennartsson. In this session, practical experiences from major population studies were discussed. From a national perspective, Amaia Caldéron-Larrañaga and Sölve Elmståhl presented how they have addressed non-response rates in the Swedish National Study on Aging and Care (SNAC), followed by an international perspective by Parminder Raina, who discussed how they have tackled this issue in the Canadian Longitudinal Study on Aging (CLSA). The session was finalized with hands-on European perspectives on dealing with non-response rates and improving them, presented by Paola Zaninotto from the English Longitudinal Study of Ageing (ELSA) and Arne Bethmann from the Survey of Health, Ageing and Retirement in Europe (SHARE).
Parminder Raina, Paola Zaninotto, Arne Bethmann, Hugo Westerlund, Sölve Elmståhl, and Amaia Calderón-Larrañaga. Photo: Maria Yohuang.
Both sessions concluded with two interesting panel discussions led by Hugo Westerlund. In general, declining response rates in population studies are a global trend. Higher participation is typically observed among older individuals, those born in Nordic countries, and those with higher education, compared to younger individuals, people born outside the Nordic region, and those with lower education. Addressing non-response is challenging, but research suggests several strategies may help, e.g.,: 1) Conditional incentives offered only to those who actually respond or participate in the study; 2) Multiple reminders (up to a maximum of four or five) using a multi-modal approach such as letters, phone calls, and SMS; 3) Advance letter informing indiviudals they will soon be contacted to be part of a study.
The day finalized with the speakers and chairs gathering for a dinner at the restaurant Portal, where discussions on response rates and ways to improve them continued. A big thank you to all speakers, chairs, and participants for making this symposium a success!
Don’t miss the opportunity to join us for the upcoming seminar: Tackling and overcoming non-response in cohort and survey studies – a national symposium for researchers and stakeholders”, which is jointly arranged by the research infrastructures NEAR (National E-infrastructure for Aging Research) and REWHARD (Relations, Work and Health across the life-course – A Research Data infrastructure).
The symposium aims to examine the causes of declining response rates in cohort and survey studies and identify effective strategies to manage non-response, along with gaining practical insights from other studies. The symposium will be held onsite (limited spots available, first-come, first-served) and online. The seminar is free, and everyone is welcome!
Please find attached the program and make sure to register by 17 November using this link: https://forms.office.com/e/uD1xMWTGZf
Event Details:
- Title: Tackling and overcoming non-response in cohort and survey studies – a national symposium for researchers and stakeholders.
- Aims: To explore the causes of declining response rates in cohort and survey studies and identify effective strategies to address this issue, while also gaining practical insights from other studies on managing non-response.
- Date: 26 November 2025
- Time: 9:15 AM – 4:20 PM
- Venue: Eva & Georg Klein, Biomedicum, Solnavägen 9, 171 65 Solna, and via Zoom
Dementia is one of the major public health challenges, and the number of people living with a diagnosis of dementia is increasing, posing significant challenges for health and social care. At the same time, research in the field is progressing. Today, it is possible to diagnose dementia earlier in the course of the disease, and more treatment methods are being developed. One of NEAR’s main objectives is to develop sustainable strategies aimed at enhancing health and providing more effective care for the aging population. In line with this goal, we’re proud to announce that some of our research has contributed to the foundation of the government’s new national dementia strategy, titled “Every Day Counts: National Dementia Strategy 2025–2028“.
The strategy has two key points: 1) The care and support of people living with dementia must be based on a preventive approach, and new knowledge about ways to prevent the risk of dementia needs to be addressed in health and social care. 2) Individuals should be able to continue living a dignified and meaningful life after a dementia diagnosis, where access to adequate care and support is important.
Laura Fratiglioni, Professor and Senior Mentor of NEAR. Photo: Annika Fritsby Granström.
This strategy was presented during a webinar, where Senior Professor and Mentor of NEAR, Laura Fratiglioni, presented strategies for the early detection of dementia. This was followed by a panel discussion on preventing risk factors and early detection of dementia. The NEAR Steering Group member and CEO of the Swedish Dementia Center, Wilhelmina Hoffman, and representatives from municipalities and organizations were also part of this discussion. In the second part of the webinar, the attention shifted to rehabilitation for individuals with dementia, with a focus on physical activity, including examples from elderly care services. In conclusion, the session underscored the importance of every moment and care in the journey for those receiving and living with a dementia diagnosis and their caregivers. Every year, week, and day counts, both for those living with dementia and for their loved ones.
Watch the full webinar here: https://api.screen9.com/preview/yzW-MK4BCJ2XZ8On7QdtdZ3i1RE6mnS00JPHBVfYweI
The webinar is a collaboration between the National Competence Center for Elderly Care at the National Board of Health and Welfare and the government’s Elder Research Council, initiated by the Minister for Elderly and Social Insurance, Anna Tenje.
Photo of panel discussants members. Photo: Maria Yohuang
On October 12th, NEAR and the Comparative Research Center Sweden (CORS) held a seminar entitled “Ethical Perspectives on Data Usage in Research Infrastructures”. The seminar aimed to understand the ethical aspects of using secondary data in research infrastructures. During the afternoon, around 100 participants attended, on-site or online, to listen to the seminar, which involved representatives from authority, research, infrastructure, juridical, and philosophical perspectives.
Photo of Johan Modin and Björn Halleröd. Photo: Maria Yohuang
Björn Halleröd, Professor in Sociology at the University of Gothenburg and Chair of the external Steering Group of NEAR moderated the day. Johan Modin, Director of the Swedish Ethical Review Authority (SERA), presented perspectives from SERA’s point of view. Along with protecting research subjects, the authority’s primary purpose is safeguarding and upholding trust and confidence in research. Research ethical tools are informed consent, assessment of risk vs. benefits, and choice of research subjects. Johan also informed about situations in which the Ethical Review Act (2003:460) applies and the requirements for approval. For example, all research must be conducted with respect for human dignity and research participants’ risks must always be counterbalanced by the scientific value of the research project.
Photo of Hugo Westerlund och Henrik Ekengren Oscarsson. Photo: Maria Yohuang
Hugo Westerlund, Professor of Epidemiology at Stockholm University (SU) and the Director of Relations, Work and Health across the life-course – a Research Data Infrastructure (REWHARD), and Henrik Ekengren Oscarsson, Professor of Political Science and Electoral Studies, University of Gothenburg (GU) and Director of the Swedish National Election Studies Program (SNES), presented perspectives from research and infrastructure perspectives. They talked about the importance of upholding research infrastructure for the highest possible use of data cost-efficiently, as well as enabling more high-quality and high-powered research. Infrastructures can also decrease survey weariness, enable better data control, improve generalizability, and retain and strengthen Sweden’s position in research. Research requires ethical permission and can only be obtained for specific research projects. Infrastructures are not predefined projects. This can be problematic in light of scientific discovery, academic freedom, and innovation. Suggestions for reforms to the Ethical Review Act are 1) appropriate legislation and ethical vetting for research databases/infrastructures; 2) a fast track for ethical vetting for specific research projects in terms of emergency; 3) a holistic perspective to the ethical approval process; 4) the possibility of applying for ethical approval for master thesis retrospectively. Moreover, a legal and administrative framework for ethical vetting of research databases is needed and there should be a clear framework for safeguarding sensitive data.
Photo of Lena Wahlberg. Photo: Maria Yohuang
Lena Wahlberg, Associate Professor of Jurisprudence, specializing in Medical Law, Lund University (LU), focused on ethical data usage from a juridical and theoretical perspective. She presented the Ethical Review Act (2003:460)
- The act protects individuals and respects human dignity in research.
Requires an ethical review of research that:
- Includes the handling of sensitive personal data or personal data regarding crimes
- Involves the physical intervention of a living or deceased person
- Use a method that aims to affect or create an apparent risk of injuring the research subject physically or mentally.
- Relates to the study of biological material that can be traced to a living or deceased person.
In some respects, the Act is too inclusive, and the relationship between the Act and the Swedish Principle of public access to information is complicated. Moreover, violations can lead to a tangled combination of consequences such as a fine or imprisonment for two years, withdrawal of publications, termination of employment, and fewer opportunities for future funding. There has been criticism of the Act, and an investigation is currently ongoing, appointed by the Government Offices. At the same time, some research of potential ethical concern falls beyond the act’s scope, including research that seems relevant vis-à-vis the act’s aim to protect respect for human dignity. Simply put, human dignity means that everyone has intrinsic value as a member of the human species. Human dignity can be violated in various ways, e.g., by treating a person as an object/commodity, verbally humiliating someone, changing the nature of the human species, or not respecting a person’s autonomy.
Photo of Torbjörn Tännsjö. Photo: Maria Yohuang
Torbjörn Tännsjö, Professor Emeritus of Practical Philosophy, presented his view on data usage from a philosophical perspective. He spoke about scenarios where medical samples were collected a long time ago. No informed consent was obtained for the use we currently want to make of them. This issue was discussed from the perspective of three moral theories: 1) Moral rights (Locke/Nozick); 2) Deontology (Immanuel Kant); and 3) Utilitarianism. The moral right principle relates to owning yourself morally, and you have an absolute right to integrity. You have the right to consent to what you feel is right for you (even if it means your death), but no one can invade your property (your body) without your consent. Kant argues from the perspective of human dignity that one should never treat a human being as a mere means. The final moral principle, utilitarianism, strives to maximize happiness. This is difficult to apply since we do not know what would happen if we acted in one way versus what would happen if we acted differently. How would most people react if they learned that we used their material without explicit consent? Torbjörn’s conjecture: “With complacency! People aren’t that concerned”.
Photo of panel discussants members. Photo: Maria Yohuang
Following the presentations, the speakers from authority, academic, political, and juridical perspectives participated in a panel discussion for which they were joined by Lina Nordquist, Spokesperson for Health Care Policy, Liberalerna (L) and Associate Professor, Uppsala University (UU), as well as Mats Gustavsson, Data Protection Officer and Lawyer, Karolinska Institutet (KI). Among other things, a discussion on the need for legislation for infrastructures, not specific research projects took place. Overall, everyone agreed on the need for continued discussions and dialogue between all sectors on improving and developing ethical legislation on data usage in national infrastructures.
The Scientific Communicator of NEAR, Linnea Sjöberg, presented NEAR and talked about older adults’ health at a seminar arranged by Länsnykterhetsförbundet, Västra Götaland on 24 February, 2022.
Around 200 persons attended the seminar and it rendered discussions on the importance of studying health in older persons, aging in Sweden and globally from demographic- and historical perspectives, as well as risk- and protective factors in relation to older adults’ physical and mental health.
Read the full invitation letter and program here
The Scientific Communicator of NEAR, Linnea Sjöberg, presented NEAR at the virtual morning coffee meeting with the Center for Alzheimer Research (CAR) at Karolinska Institutet (KI), 1 December 2021. The seminar rendered a lot of discussion on the possibilities and potential use of the NEAR data among the participating researchers.
Photo of Linnea Sjöberg by Maria Yohuang
The NEAR Director, Laura Fratiglioni had the opening lecture with the title: “Aging research: achievements, current challenges and future perspectives” at the Swetaly Ageing online research seminar 28 September 2021. The host for the research seminar was University of Gothenburg.
The Strategic Research Area Neuroscience (StratNeuro) will hold a lunch Webinar with the title: “The Ageing Brain” on April 12. The NEAR Director, Laura Fratiglioni and NEAR Scientific Advisory Board member, Miia Kivipelto, will participate and talk about: “Dementia in older adults: the body-mind connection”, respectively “Multidomain precision prevention for dementia and Alzheimer’s disease: new findings from World-Wide-FINGERS trials”.
KI’s resource group for the health of the elderly during covid-19 invites to a webinar where prominent researchers from Norway, Denmark and Sweden present and discuss the Covid-19 pandemic in relation to the organization of elderly care in each country.
(In respective language. Not in English)
Tuesday 10 November, 11:30AM–1:15PM
On Zoom: https://ki-se.zoom.us/j/61182752103
The webinar “Medical care of elderly during the Covid-19 pandemic, with eight months of experience” took place online on 12 October. The webinar (in English and Swedish) can be watched in full length below and the program here.
It was introduced by Professor Maria Eriksdotter and Ole Petter Ottersen, President of Karolinska Institutet. The opening lecturer was Professor Kaisu Pitkälä, University of Helsinki, who presented the successful Finnish work with controlling their Covid-19 outbreaks, their mobile testing teams and measures to mitigate the spread.
Experiences from the Stockholm geriatric health care was shared by Dr Martin Annetorp, who showed how useful data collection had been made despite the very difficult circumstances and Professor Dorota Religa, who pointed to the importance of frailty estimates in the care for the elderly.
In the final talk, Christian Molnar, head dr of the special care units in Stockholm, shared his experiences of the practical difficulties during the growing pandemic.
Professor Kaisu Pitkälä answering questions.
