Health Research Policy and Systems最新文献

{"title":"Bridging the gap: financing health promotion and disease prevention in Indonesia.","authors":"Ahmad Fuady, Mariska Anindhita, Matsna Haniifah, Abdillah Ahsan, Agus Sugiharto, Marinda Asiah Nuril Haya, Trevino Pakasi, Dian Kusuma, Dewi Amila Solikha, Pungkas Bahjuri Ali, Indah Suci Widyahening","doi":"10.1186/s12961-024-01206-7","DOIUrl":"https://doi.org/10.1186/s12961-024-01206-7","url":null,"abstract":"<p><strong>Background: </strong>Spending on preventive care in low- and middle-income countries (LMICs), including Indonesia, is much lower than spending on curative care. There has been a pressing need to develop a clear pathway to increase spending on preventive care. This study aimed to assess the current financing landscape for health promotion and disease prevention in Indonesia and, subsequently, to develop a framework and recommendations for future health promotion financing in the country.</p><p><strong>Methods: </strong>We adopted a mixed-method approach to gather information from all relevant stakeholders from December 2022 to June 2023. For the qualitative approach, we conducted (a) in-depth interviews (IDIs) and (b) focus group discussions (FGDs) with government officials at national and district levels, academics, professional organizations, healthcare workers in primary healthcare centres (PHCs), community health volunteers, non governmental organizations and private companies. For the quantitative approach, we applied a national online survey to healthcare workers involved in health promotion in PHCs. IDIs and FGDs were conducted with purposefully selected resource persons at the national level, five selected districts across Indonesia, and within 15 primary health offices and their communities. All qualitative data were recorded, transcribed, coded, interpreted, and then triangulated with national survey findings to develop the financing framework.</p><p><strong>Results: </strong>We identified gaps between the theory and practice of health promotion and disease prevention. These included the limited scope of health promotion initiatives, lack of direction and coordination between ministries, agencies and government levels, limited availability and capacity of health promoters, various yet uncoordinated funding resources and inflexibility in using the funds. To bridge the gap, the framework we developed suggests strengthening the legal and regulatory basis, strategically prioritizing financing arrangements, promoting evidence-based health promotion activities, developing the capacity of health promoters, enhancing the health financing information system and improving monitoring and evaluation.</p><p><strong>Conclusions: </strong>Identified gaps and challenges in health promotion and disease prevention initiatives inform the development of our framework for future health promotion financing. This framework assists the national government in organizing national health promotion financing strategies and potentially serves as a valuable model for other LMICs.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"146"},"PeriodicalIF":3.6,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11481782/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142463345","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Development and psychometric validation of an age-friendly health system assessment tool in the Iranian context.","authors":"Badriyeh Karami, Maryam Tajvar, Abbas Ostadtaghizadeh, Mehdi Yaseri","doi":"10.1186/s12961-024-01232-5","DOIUrl":"10.1186/s12961-024-01232-5","url":null,"abstract":"<p><p>Evaluating health system interventions for elderly care necessitates a context-specific, credible and dependable instrument. This research was dedicated to creating and validating a tool to assess the health system's age-friendliness. The study unfolded in two pivotal stages: the generation of items utilizing a hybrid model and the psychometric appraisal of the tool, encompassing both validity and reliability assessments. From an initial pool of 522 items derived from a systematic scoping review and qualitative analysis, a concise assessment tool emerged, featuring 52 items across 6 domains: governance, information, resources, service delivery, community engagement and outcomes. The 52-item tool offers a straightforward, substantiated and robust means to gauge age-friendliness, pinpoint health system deficiencies and facilitate strategic planning on the basis of its insights.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"144"},"PeriodicalIF":3.6,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11468512/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142400039","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Why \"free maternal healthcare\" is not entirely free in Ghana: a qualitative exploration of the role of street-level bureaucratic power.","authors":"Kennedy A Alatinga, Vivian Hsu, Gilbert Abotisem Abiiro, Edmund Wedam Kanmiki, Emmanuel Kofi Gyan, Cheryl A Moyer","doi":"10.1186/s12961-024-01233-4","DOIUrl":"10.1186/s12961-024-01233-4","url":null,"abstract":"<p><strong>Background: </strong>Ghana introduced a free maternal healthcare policy within its National Health Insurance Scheme (NHIS) in 2008 to remove financial barriers to accessing maternal health services. Despite this policy, evidence suggests that women incur substantial out-of-pocket (OOP) payments for maternal health care. This study explores the underlying reasons for these persistent out-of-pocket payments within the context of Ghana's free maternal healthcare policy.</p><p><strong>Methods: </strong>Cross-sectional qualitative data were collected through interviews with a purposive sample of 14 mothers and 8 healthcare providers/administrators in two regions of Ghana between May and September 2022. All interviews were audio-recorded, transcribed and imported into the NVivo 14.0 software for analysis. An iteratively developed codebook guided the coding process. Our thematic data analysis followed the Attride-Sterling framework for network analysis, identifying basic, organising themes and global themes.</p><p><strong>Results: </strong>We found that health systems and demand-side factors are responsible for the persistence of OOP payments despite the existence of the free maternal healthcare policy in Ghana. Reasons for these payments arose from health systems factors, particularly, NHIS structural issues - delayed and insufficient reimbursements, inadequate NHIS benefit coverage, stockouts and supply chain challenges and demand-side factors - mothers' lack of education about the NHIS benefit package, and passing of cost onto patients. Due to structural and system level challenges, healthcare providers, exercising their street-level bureaucratic power, have partly repackaged the policy, enabling the persistence of out-of-pocket payments for maternal healthcare.</p><p><strong>Conclusions: </strong>Urgent measures are required to address the structural and administrative issues confronting Ghana's free maternal health policy; otherwise, Ghana may not achieve the sustainable development goals targets on maternal and child health.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"142"},"PeriodicalIF":3.6,"publicationDate":"2024-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11462662/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142389860","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Role and promise of health policy and systems research in integrating rehabilitation into the health systems.","authors":"Abdul Ghaffar, Abdulgafoor M Bachani, Adnan A Hyder, Alarcos Cieza, Aneel Bhangu, André Bussières, Diana C Sanchez-Ramirez, Dorcas B C Gandhi, Jeanine Verbunt, Kumanan Rasanathan, Louise Gustafsson, Pierre Côté, Rajiv Reebye, Roger De la Cerna-Luna, Stefano Negrini, Walter R Frontera, Sureshkumar Kamalakannan","doi":"10.1186/s12961-024-01235-2","DOIUrl":"10.1186/s12961-024-01235-2","url":null,"abstract":"<p><p>Despite recognized need and reasonable demand, health systems and rehabilitation communities keep working in silos, independently with minimal recognition to the issues of those who require rehabilitation services. Consolidated effort by health systems and rehabilitation parties, recognizing the value, power and promise of each other, is a need of the hour to address this growing issue of public health importance. In this paper, the importance and the need for integration of rehabilitation into health system is emphasized. The efforts being made to integrate rehabilitation into health systems and the potential challenges in integration of these efforts were discussed. Finally, the strategies and benefits of integrating rehabilitation in health systems worldwide is proposed. Health policy and systems research (HPSR) brings a number of assets that may assist in addressing the obstacles discussed above to universal coverage of rehabilitation. It seeks to understand and improve how societies organize themselves to achieve collective health goals; considers links between health systems and social determinants of health; and how different actors interact in policy and implementation processes. This multidisciplinary lens is essential for evidence and learning that might overcome the obstacles to the provision of rehabilitation services, including integration into health systems. Health systems around the world can no longer afford to ignore rehabilitation needs of their populations and the World Health Assembly (WHA) resolution marked a global call to this effect. Therefore, national governments and global health community must invest in setting a priority research agenda and promote the integration of rehabilitation into health systems. The context-specific, need-based and policy-relevant knowledge about this must be made available globally, especially in low- and middle-income countries. This could help integrate and implement rehabilitation in health systems of countries worldwide and also help achieve the targets of Rehabilitation 2030, universal health coverage and Sustainable Development Goals.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"143"},"PeriodicalIF":3.6,"publicationDate":"2024-10-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11462852/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142389858","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Transition and change: opportunities and challenges of CHW programme reform for community health systems and vertical disease programmes in Liberia.","authors":"Georgina Zawolo, Gertrude Nsorma Nyaaba, Gartee Nallo, Karsor Kollie, Rachael Thomson, Joanna Raven, Sally Theobald, Laura Dean","doi":"10.1186/s12961-024-01211-w","DOIUrl":"https://doi.org/10.1186/s12961-024-01211-w","url":null,"abstract":"<p><strong>Background: </strong>Globally, community health worker (CHW) programmes are critical to addressing health worker shortages and have been recognised as critical pillars within the drive towards universal health coverage (UHC). In 2016, the Liberian Ministry of Health launched the National Community Health Services Policy 2016-2021, which included significant CHW programme reform to address ongoing health workforce capacity gaps in the country. However, little consideration was given to the impact of such reforms on ongoing health interventions that rely heavily on the use of CHW cadres. Our study explores how CHW programme reform in Liberia influenced performance of CHWs involved in the delivery of Neglected Tropical Disease (NTD) programmes to elucidate how health systems reform can impact the delivery of routine health interventions and vice versa.</p><p><strong>Methods: </strong>We used a qualitative case study approach conducted between March 2017 and August 2018. Our instrumental case study approach uses qualitative methods, including document review of five CHW and NTD program-related policy documents; 25 key informant interviews with facility, county, and national level decision-makers; and 42 life and job histories with CHWs in Liberia. Data were analysed using a thematic framework approach, guided by Kok et al. framework of CHW performance. Data were coded in QRS NVIVO 11 Pro.</p><p><strong>Results: </strong>Our findings show that CHW programme reform provides opportunities and challenges for supporting enhanced CHW performance. In relation to health system hardware, we found that CHW programme reform provides better opportunities for: formal recognition of CHWs; strengthening capacity for effective healthcare delivery at the community level through improved and formalised training; a more formal supervision structure; and provision of monthly incentives of 70 US dollars. Efficiency gaps in routine intervention delivery can be mitigated through the strengthening of these hardware components. Conversely, supervision deficits in routine CHW functioning can be supported through health interventions. In relation to systems software, we emphasise the ongoing importance of community engagement in CHW selection that is responsive to gendered power hierarchies and accompanied by gendered transformative approaches to improving literacy.</p><p><strong>Conclusions: </strong>This study shows how CHW programme reform provides opportunities and challenges for health system strengthening that can both positively and negatively impact the functioning of routine health interventions. By working together, CHW programmes and routine health interventions have the opportunity to leverage mutually beneficial support for CHWs, which can enhance overall systems functioning by enhancing CHW performance.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"141"},"PeriodicalIF":3.6,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11460177/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142389859","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Correction: Building Health Policy and Systems Research (HPSR) capacity in India: reflections from the India HPSR fellowship program (2020-2023).","authors":"Shilpa John, Sudha Ramani, Syed Mohd Abbas, Sumit Kane, Dorothy Lall, Prashanth N Srinivas, Devaki Nambiar, Bruno Marchal, Sara Van Belle, Rajeev Sadanandan, Narayanan Devadasan","doi":"10.1186/s12961-024-01234-3","DOIUrl":"10.1186/s12961-024-01234-3","url":null,"abstract":"","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"140"},"PeriodicalIF":3.6,"publicationDate":"2024-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11448040/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142371664","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Working in a relational way is everything: Perceptions of power and value in a drug policy-making network.","authors":"Naomi Zakimi, Martin Bouchard, Alison Ritter, Alissa Greer","doi":"10.1186/s12961-024-01225-4","DOIUrl":"10.1186/s12961-024-01225-4","url":null,"abstract":"<p><strong>Background: </strong>The development of drug policies has been a major focus for policy-makers across North America in light of the ongoing public health emergency caused by the overdose crisis. In this context, the current study examined stakeholders' experiences and perceptions of power and value in a drug policy-making process in a North American city using qualitative, questionnaire, and social network data.</p><p><strong>Methods: </strong>We interviewed 18 people who participated in the development of a drug policy proposal between October 2021 and March 2022. They represented different groups and organizations, including government (n = 3), people who use drugs-led advocacy organizations (n = 5), other drug policy advocacy organizations (n = 5), research (n = 3) and police (n = 2). Most of them identified as men (n = 8) and white (n = 16), and their ages ranged between 30 and 80 years old (median = 50). Social network analysis questionnaires and semi-structured qualitative interviews were administered via Zoom. Social network data were analysed using igraph in R, and qualitative data were analysed using thematic analysis. The analyses explored perceptions of value and power within a drug policy-making network.</p><p><strong>Results: </strong>The policy-making network showed that connections could be found across participants from different groups, with government officials being the most central. Qualitative data showed that inclusion in the network and centrality did not necessarily translate into feeling powerful or valued. Many participants were dissatisfied with the process despite having structurally advantageous positions or self-reporting moderately high quantitative value scores. Participants who viewed themselves as more valued acknowledged many process shortcomings, but they also saw it as more balanced or fair than those who felt undervalued.</p><p><strong>Conclusions: </strong>While participation can make stakeholders and communities feel valued and empowered, our findings highlight that inclusion, position and diversity of connections in a drug policy-making network do not, in and of itself, guarantee these outcomes. Instead, policy-makers must provide transparent terms of reference guidelines and include highly skilled facilitators in policy discussions. This is particularly important in policy processes that involve historical power imbalances in the context of a pressing public health emergency.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"139"},"PeriodicalIF":3.6,"publicationDate":"2024-10-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11448052/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142371665","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Navigating the complexity of a collaborative, system-wide public health programme: learning from a longitudinal qualitative evaluation of the ActEarly City Collaboratory.","authors":"Laura Nixon, Laura Sheard, Jessica Sheringham, Amy Creaser, Halima Iqbal, Patience Gansallo, Liina Mansukoski, Maria Bryant, Bridget Lockyer","doi":"10.1186/s12961-024-01227-2","DOIUrl":"10.1186/s12961-024-01227-2","url":null,"abstract":"<p><strong>Background: </strong>Addressing the upstream social determinants of health (e.g. built environment, education) can reduce the burden of non-communicable diseases. To do so effectively often requires system-wide collaboration. However, collaborating across multiple sectors, organizations and disciplines within a complex system can be challenging. ActEarly was a public health research consortium that aimed to improve child health by building an interdisciplinary, cross-city partnership to develop and/or evaluate upstream interventions, increase research capacity and improve collaboration between researchers, local authorities and communities. This paper explores ActEarly's experiences of navigating complexity to identify mechanisms that supported its implementation and proposes recommendations for future intersectoral and interdisciplinary population health research collaborations.</p><p><strong>Methods: </strong>We conducted a longitudinal qualitative study of ActEarly, integrating findings from inductive documentary analysis of internal documents (mainly meetings minutes and reports) (n = 114) and interviews (n = 70) with 45 consortium members at three different timepoints (2018, 2021, 2023). Participants worked across different organizations, cities, roles and levels of seniority in the consortium.</p><p><strong>Findings: </strong>Clarity, Unity, Flexibility and Feasibility were seen as the key mechanisms required to support ActEarly's implementation. Clear aims, governance structures and communication were necessary to manage the uncertainty of the complex system. A unified approach, characterized by strong relationships, having a shared vision and communal access to resources supported effective collaboration. Flexibility was required to adjust to different ways of working, respond to wider system events and manage the consortium. Establishing feasible aims that responded to the limitations of the system, the available resources and research infrastructure was required for teams to deliver the work.</p><p><strong>Conclusions: </strong>Implementing multi-faceted programmes in a complex system can be challenging. We recommend that future whole-systems consortia seeking to improve population health build Clarity, Unity, Flexibility and Feasibility into their programmes, noting the complex interrelationships between these factors. Iterative reflections from all parties should support delivery amidst the uncertainty that comes with running a population health research collaboration, and strong leadership and governance should play a key role in ensuring that these are built into foundations the programme.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"138"},"PeriodicalIF":3.6,"publicationDate":"2024-10-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11446050/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142365064","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Understanding healthcare professionals' responses to patient complaints in secondary and tertiary care in the UK: A systematic review and behavioural analysis using the Theoretical Domains Framework.","authors":"Vivi Antonopoulou, Carly Meyer, Paul Chadwick, Beckie Gibson, Falko F Sniehotta, Ivo Vlaev, Anna Vassova, Louis Goffe, Fabiana Lorencatto, Alison McKinlay, Angel Marie Chater","doi":"10.1186/s12961-024-01209-4","DOIUrl":"10.1186/s12961-024-01209-4","url":null,"abstract":"<p><strong>Background: </strong>The path of a complaint and patient satisfaction with complaint resolution is often dependent on the responses of healthcare professionals (HCPs). It is therefore important to understand the influences shaping HCP behaviour. This systematic review aimed to (1) identify the key actors, behaviours and factors influencing HCPs' responses to complaints, and (2) apply behavioural science frameworks to classify these influences and provide recommendations for more effective complaints handling behaviours.</p><p><strong>Methods: </strong>A systematic literature review of UK published and unpublished (so-called grey literature) studies was conducted (PROSPERO registration: CRD42022301980). Five electronic databases [Scopus, MEDLINE/Ovid, Embase, Cumulated Index to Nursing and Allied Health Literature (CINAHL) and Health Management Information Consortium (HMIC)] were searched up to September 2021. Eligibility criteria included studies reporting primary data, conducted in secondary and tertiary care, written in English and published between 2001 and 2021 (studies from primary care, mental health, forensic, paediatric or dental care services were excluded). Extracted data included study characteristics, participant quotations from qualitative studies, results from questionnaire and survey studies, case studies reported in commentaries and descriptions, and summaries of results from reports. Data were synthesized narratively using inductive thematic analysis, followed by deductive mapping to the Theoretical Domains Framework (TDF).</p><p><strong>Results: </strong>In all, 22 articles and three reports met the inclusion criteria. A total of 8 actors, 22 behaviours and 24 influences on behaviour were found. Key factors influencing effective handling of complaints included HCPs' knowledge of procedures, communication skills and training, available time and resources, inherent contradictions within the role, role authority, HCPs' beliefs about their ability to handle complaints, beliefs about the value of complaints, managerial and peer support and organizational culture and emotions. Themes mapped onto nine TDF domains: knowledge, skills, environmental context and resources, social/professional role and identity, social influences, beliefs about capability, intentions and beliefs about consequences and emotions. Recommendations were generated using the Behaviour Change Wheel approach.</p><p><strong>Conclusions: </strong>Through the application of behavioural science, we identified a wide range of individual, social/organizational and environmental influences on complaints handling. Our behavioural analysis informed recommendations for future intervention strategies, with particular emphasis on reframing and building on the positive aspects of complaints as an underutilized source of feedback at an individual and organizational level.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"137"},"PeriodicalIF":3.6,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443808/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142361447","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"European health regulations reduce registry-based research.","authors":"Oscar Brück, Enni Sanmark, Ville Ponkilainen, Alexander Bützow, Aleksi Reito, Joonas H Kauppila, Ilari Kuitunen","doi":"10.1186/s12961-024-01228-1","DOIUrl":"10.1186/s12961-024-01228-1","url":null,"abstract":"<p><strong>Background: </strong>The European Health Data Space (EHDS) regulation has been proposed to harmonize health data processing. Given its parallels with the Act on Secondary Use of Health and Social Data (Secondary Use Act) implemented in Finland in 2020, this study examines the consequences of heightened privacy constraints on registry-based medical research.</p><p><strong>Methods: </strong>We collected study permit counts approved by university hospitals in Finland in 2014-2023 and the data authority Findata in 2020‒2023. The changes in the study permit counts were analysed before and after the implementation of the General Data Protection Regulation (GDPR) and the Secondary Use Act. By fitting a linear regression model, we estimated the deficit in study counts following the Secondary Use Act.</p><p><strong>Results: </strong>Between 2020 and 2023, a median of 5.5% fewer data permits were approved annually by Finnish university hospitals. On the basis of linear regression modelling, we estimated a reduction of 46.9% in new data permits nationally in 2023 compared with the expected count. Similar changes were neither observed after the implementation of the GDPR nor in permit counts of other medical research types, confirming that the deficit was caused by the Secondary Use Act.</p><p><strong>Conclusions: </strong>This study highlights concerns related to data privacy laws for registry-based medical research and future patient care.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"135"},"PeriodicalIF":3.6,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11443657/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142345184","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}