Health Research Policy and Systems最新文献

{"title":"The embedded research model: an answer to the research and evaluation needs of community service organizations?","authors":"Bianca E Kavanagh, Vincent L Versace, Kevin P Mc Namara","doi":"10.1186/s12961-024-01246-z","DOIUrl":"10.1186/s12961-024-01246-z","url":null,"abstract":"<p><p>There is an increasing need to provide evidence of outcomes within the community services sector. However, funding challenges, workforce pressures, and the complex social contexts in which community service organizations operate limit their potential for organizational capacity building. This has flow on effects on the ability to conduct impactful and strategic research. The embedded research model (i.e., when a researcher is embedded into a \"host\" organisation) may aid in building research and evaluation capacity. This may be particularly useful for the purposes of routine outcome monitoring and continuous quality improvement, which may in turn lead to opportunities for local research and evaluation through the embedded research model. Previous research on the embedded research model across various settings has suggested a number of lessons for implementation. However, to date, nil research has focused on community service organizations. Additional considerations need to be made within this context due to resource limitations, ethical issues, and diverse reporting requirements. Such considerations include the need to take a 'slow science' approach to research and evaluation outputs, consideration of the organisation's readiness for change, and the need to report activities in a transparent, thorough, and consistent manner. The endorsement of embedded research in community service organisations may aid in providing evidence of outcomes for clients, and simultaneously, increase the ability for policymakers to evidence-informed decisions on how to improve outcomes for the local population.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"155"},"PeriodicalIF":3.6,"publicationDate":"2024-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11580547/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142681703","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":"Implementation of national policies and interventions (WHO Best Buys) for non-communicable disease prevention and control in Ghana: a mixed methods analysis.","authors":"Leonard Baatiema, Olutobi Adekunle Sanuade, Irene Akwo Kretchy, Lydia Okoibhole, Sandra Boatemaa Kushitor, Hassan Haghparast-Bidgoli, Raphael Baffour Awuah, Samuel Amon, Sedzro Kojo Mensah, Carlos S Grijalva-Eternod, Kafui Adjaye-Gbewonyo, Publa Antwi, Hannah Maria Jennings, Daniel Kojo Arhinful, Moses Aikins, Kwadwo Koram, Ann Blandford, Edward Fottrell","doi":"10.1186/s12961-024-01242-3","DOIUrl":"10.1186/s12961-024-01242-3","url":null,"abstract":"<p><strong>Background: </strong>The World Health Organization (WHO) encourages all member states to adopt and implement a package of essential evidence-based interventions called the Best Buys to reduce the burden of non-communicable diseases (NCDs). To date, little is known about the implementation of national policies and interventions for NCD control in the WHO member states in sub-Saharan Africa. Our study aimed to evaluate the implementation of national policies and interventions (WHO Best Buys) for non-communicable disease prevention and control in Ghana.</p><p><strong>Methods: </strong>This was explanatory mixed methods research which started with a document review of Ghana's WHO Best Buys scores from the 2015, 2017, 2018, 2020 and 2022 WHO NCD Progress Monitor Reports. Thereafter, we conducted 25 key informant interviews and one focus group discussion (11 participants) with key policymakers and stakeholders in the NCD landscape in Ghana to understand the implementation of the NCD policies and interventions, and the policy implementation gaps and challenges faced. Data from the NCD Progress reports were presented using mean scores whilst the qualitative data was analysed thematically.</p><p><strong>Results: </strong>Ghana has shown some advancements in the implementation of the WHO Best Buys measures. Ghana's implementation scores for 2015, 2017, 2020 and 2022 were 5.0, 9.0, 5.0 and 5.5 respectively, against the mean implementation scores of 7.6/19 for lower-middle-income countries and 9.5/19 for upper-middle-income countries. Efforts to decrease major risk factors such as excessive alcohol consumption and unhealthy diet have been progressing slowly. The most common challenges were related to a) the role of socio-cultural factors, b) stakeholder engagement, c) enforcement and implementation of public health policies, d) implementation guidelines, e) public awareness and education on NCDs, f) financing of NCD prevention and control, g) curative-centered health systems, and h) over-centralization of NCD care.</p><p><strong>Conclusion: </strong>Ghana has made progress in adopting the WHO Best Buys targeting risk factors of NCDs. However, the country faces contextual barriers to effective implementation. With the retrogression of some measures over time despite making progress in some earlier years, further investigation is needed to identify facilitators for sustained implementation of the WHO Best Buys interventions.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"154"},"PeriodicalIF":3.6,"publicationDate":"2024-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11566497/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142643972","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":"Policy impact of the Imperial College COVID-19 Response Team: global perspective and United Kingdom case study.","authors":"Sabine L van Elsland, Ryan M O'Hare, Ruth McCabe, Daniel J Laydon, Neil M Ferguson, Anne Cori, Paula Christen","doi":"10.1186/s12961-024-01236-1","DOIUrl":"10.1186/s12961-024-01236-1","url":null,"abstract":"<p><strong>Background: </strong>Mathematical models and advanced analytics play an important role in policy decision making and mobilizing action. The Imperial College Coronavirus Disease 2019 (COVID-19) Response Team (ICCRT) provided continuous, timely and robust epidemiological analyses to inform the policy responses of governments and public health agencies around the world. This study aims to quantify the policy impact of ICCRT outputs, and understand which evidence was considered policy-relevant during the COVID-19 pandemic.</p><p><strong>Methods: </strong>We collated all outputs published by the ICCRT between 01-01-2020 and 24-02-2022 and conducted inductive thematic analysis. A systematic search of the Overton database identified policy document references, as an indicator of policy impact.</p><p><strong>Results: </strong>We identified 620 outputs including preprints (16%), reports (29%), journal articles (37%) and news items (18%). More than half (56%) of all reports and preprints were subsequently peer-reviewed and published as a journal article after 202 days on average. Reports and preprints were crucial during the COVID-19 pandemic to the timely distribution of important research findings. One-fifth of ICCRT outputs (21%) were available to or considered by United Kingdom government meetings. Policy documents from 41 countries in 26 different languages referenced 43% of ICCRT outputs, with a mean time between publication and reference in the policy document of 256 days. We analysed a total of 1746 policy document references. Two-thirds (61%) of journal articles, 39% of preprints, 31% of reports and 16% of news items were referenced in one or more policy documents (these 217 outputs had a mean of 8 policy document references per output). The most frequent themes of the evidence produced by the ICCRT reflected the evidence-need for policy decision making, and evolved accordingly from the pre-vaccination phase [severity, healthcare demand and capacity, and non-pharmaceutical interventions (NPIs)] to the vaccination phase of the epidemic (variants and genomics).</p><p><strong>Conclusion: </strong>The work produced by the ICCRT affected global and domestic policy during the COVID-19 pandemic. The focus of evidence produced by the ICCRT corresponded with changing policy needs over time. The policy impact from ICCRT news items highlights the effectiveness of this unique communication strategy in addition to traditional research outputs, ensuring research informs policy decisions more effectively.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"153"},"PeriodicalIF":3.6,"publicationDate":"2024-11-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11559147/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142618767","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":"Real-world data to improve organ and tissue donation policies: lessons learned from the tissue and organ donor epidemiology study.","authors":"Melissa A Greenwald, Hussein Ezzeldin, Emily A Blumberg, Barbee I Whitaker, Richard A Forshee","doi":"10.1186/s12961-024-01237-0","DOIUrl":"10.1186/s12961-024-01237-0","url":null,"abstract":"<p><strong>Background: </strong>The transplantation of human organs, and some human tissues, is often the only life-saving therapy available for serious and life-threatening congenital, inherited or acquired diseases. However, it is associated with a risk of transmission of communicable diseases from donor to recipient. It is imperative to understand the characteristics of the donor population (including both potential and actual donors) to inform policies that protect recipient safety. The Tissue and Organ Donor Epidemiology Study (TODES) was a pilot project designed to identify and collect standardized information on deceased persons referred for organ, tissue and/or eye donation, and to estimate (to the extent possible) infectious disease prevalence and incidence of human immunodeficiency virus (HIV), hepatitis B virus (HBV) and hepatitis C virus (HCV) in this population. TODES is summarized here to shed light on addressable limitations on accessing data needed for transplant recipient safety. Limitations, future research needs and potential pathways to solve the remaining data needs are explored.</p><p><strong>Methods: </strong>Retrospective data for all deceased donors during a 5-year period from 2009 to 2013 were obtained from participating organ procurement organizations (OPOs), tissue establishments and eye banks. These decedent data were used to ascertain whether the available real-world data (RWD) could be used to inform donor screening and testing policy.</p><p><strong>Results: </strong>The TODES database contains 291 848 records received from nine OPOs and 42 451 records received from four eye banks. Data were analysed from deceased donors with at least one organ, tissue or ocular tissue recovered with the intent to transplant. Results for potential donors were not analysed. Available RWD at the time of the TODES study were not fit-for-purpose to help characterize the organ, tissue and eye donor populations and/or to inform donor screening policy.</p><p><strong>Conclusions: </strong>Recent advances in electronic data collection systems make it more realistic to now collect fit-for-purpose RWD that address the research needed to improve transplant safety.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"152"},"PeriodicalIF":3.6,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11556174/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142618768","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":"\"All of these things interact, that's why it's such a wicked problem\": Stakeholders' perspectives of what hinders low back pain care in Australia and how to improve it.","authors":"Nathalia Costa, Carmen Huckel Schneider, Anita Amorim, Sarika Parambath, Fiona Blyth","doi":"10.1186/s12961-024-01222-7","DOIUrl":"10.1186/s12961-024-01222-7","url":null,"abstract":"<p><strong>Background: </strong>Low-quality care for low back pain (LBP) is pervasive in Australia. Drivers of low-quality care have been identified elsewhere and include misconceptions about LBP, vested interests and limited funding for evidence-based interventions. Yet, the literature that identified such drivers is not specific to the Australian context, and therefore, it is likely to represent only part of the local problem. This study aimed to determine where the most influential drivers of LBP care are in the Australian healthcare system and what could be done to address them.</p><p><strong>Methods: </strong>Clinical leaders from various disciplines, academics, hospital managers, policy-makers, consumers involved in LBP advocacy, board members of relevant health profession boards and private insurers were invited to participate in one-on-one interviews. Interviews were transcribed verbatim. Interview data were analysed using content analysis.</p><p><strong>Results: </strong>We interviewed 37 stakeholders. Challenges that hinder LBP care in Australia included variability in care and inconsistent messages, funding models that are not supportive of appropriate care for LBP, the community's understanding of LBP, vested interests and commercial forces, difficulties in accessing timely and affordable conservative care, neglect of social determinants and health inequities, short consultations, siloed practices, uncertainties that stem from gaps in evidence and the experience of having LBP, individual and contextual variability, the mismatch between evidence and practice, the Australian healthcare system itself, the lack of political will and acknowledgement of LBP as a public health issue, stigma, the need to improve human aspects and the compensation system. When discussing factors that could improve LBP care, participants raised collaboration, changes in funding, improvement of access to - and affordability of - models of care and care pathways, public health campaigns targeting LBP, enhancement of policy and governance, increasing and better training the workforce, consideration of inequities, making improvements in information sharing and reforming the worker's compensation sector.</p><p><strong>Conclusions: </strong>LBP is a wicked problem, influenced by several systemic factors. An agenda for system change in the LBP landscape should be guided by a collaborative, coherent and integrated approach across sectors to enhance quality of care and system efficiency for those who seek and provide care.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"151"},"PeriodicalIF":3.6,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11552357/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142618765","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":"What are the priorities of consumers and carers regarding measurement for evaluation in mental healthcare? Results from a Q-methodology study.","authors":"Rachel O'Loughlin, Caroline Lambert, Gemma Olsen, Kate Thwaites, Keir Saltmarsh, Julie Anderson, Nancy Devlin, Harriet Hiscock, Kim Dalziel","doi":"10.1186/s12961-024-01239-y","DOIUrl":"10.1186/s12961-024-01239-y","url":null,"abstract":"<p><strong>Background: </strong>The purpose of this study was to identify and describe common views of people with lived experience of mental health challenges - consumers and carers, families and supporters - of what they consider the most important measures to include in health economic evaluations which assess the incremental value of competing options in mental health care.</p><p><strong>Methods: </strong>Participants (n = 111) were people living in the state of Victoria, Australia, who identified as consumers of mental healthcare (n = 38); carers, family members and/or supporters (n = 43); or both (n = 30). Factor analysis based on Q-Methodology was used to identify clusters of people who hold similar viewpoints. Common viewpoints were described in terms of the characteristics of the group, and a qualitative interpretation was conducted on the basis of distinguishing statements and quotes provided in participants' own words.</p><p><strong>Results: </strong>We identified four common views: (1) safety before all else, prioritizing physical, sexual and psychological safety; (2) hope and partnership in processes of care; (3) physical and emotional health and wellbeing; and (4) care access, continuity and partnership with families. Although different priorities were identified for each viewpoint, key priority areas that were common to all views were having an environment in the health service that fosters respect and dignity, and that consumers feel heard and listened to. In sub-group and qualitative analyses, differences were observed regarding the likelihood of consumers and carers holding each of the views, as well as by age group.</p><p><strong>Conclusions: </strong>While some differences were noted between the views of consumers and carers and different age groups, there was also common ground regarding what outcomes are of most importance to measure. Including these measures in evaluation frameworks would provide a way of focussing mental healthcare decisions on the aspects of mental healthcare that are of most value to consumers and carers, thereby addressing an important shortcoming of current approaches to decision-making in mental healthcare.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"150"},"PeriodicalIF":3.6,"publicationDate":"2024-11-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11552116/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142618769","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: Role and promise of health policy and systems research in integrating rehabilitation into the health systems.","authors":"Abdul Ghafar, 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/s12961-024-01244-1","DOIUrl":"10.1186/s12961-024-01244-1","url":null,"abstract":"","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"149"},"PeriodicalIF":3.6,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11545092/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142618766","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":"Using normalisation process theory (NPT) to explore implementation of the maternal perinatal death surveillance and response (MPDSR) policy in Uganda: a reflection.","authors":"David Roger Walugembe, Katrina Plamondon, Frank Kaharuza, Peter Waiswa, Lloy Wylie, Nadine Wathen, Anita Kothari","doi":"10.1186/s12961-024-01191-x","DOIUrl":"10.1186/s12961-024-01191-x","url":null,"abstract":"<p><strong>Background: </strong>The implementation of the maternal perinatal death surveillance and response (MPDSR) policy is among the envisaged strategies to reduce the high global burden of maternal and perinatal mortality and morbidity. However, implementation of this policy across various contexts is inconsistent. Theoretically informed approaches to process evaluation can support assessment the implementation of policy interventions such as MPDSR, particularly in understanding what the actors involved actually do. In this article, we reflect on how the normalisation process theory (NPT) was used to explore implementation of the MPDSR policy in Uganda. NPT is a sociological theory concerned with the social organisation of the work (implementation) of making practices routine elements of everyday life (embedding) and of sustaining embedded practices in their social contexts (integration).</p><p><strong>Methods: </strong>This qualitative multiple case study conducted across eight districts in Uganda and among 10 health facilities (cases) representing four out of the seven levels of the Uganda health care system. NPT was utilised in several ways including informing the study design, structuring the data collection tools (semi-structured interview guides), providing an organising framework for analysis, interpreting and reporting of study findings as well as making recommendations. Study participants were purposely selected to reflect the range of actors involved in the policy implementation process. This included direct care providers located at each of the cases, the Ministry of Health and from agencies and professional associations. Data were collected using semi-structured, in-depth interviews and were inductively and deductively analysed using NPT constructs and subconstructs.</p><p><strong>Results and conclusion: </strong>NPT served useful for process evaluation, particularly in identifying factors that contribute to variations in policy implementation. Considering the NPT focus on the agency of people involved in implementation, additional efforts are required to understand how recipients of the policy intervention influence how the intervention becomes embedded within the various contexts.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"148"},"PeriodicalIF":3.6,"publicationDate":"2024-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11536870/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142575914","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":"Future health technology trends, policy, and governance perspective: the Turkish case.","authors":"Elif Sena Kambur, Hasan Hüseyin Yıldırım","doi":"10.1186/s12961-024-01217-4","DOIUrl":"10.1186/s12961-024-01217-4","url":null,"abstract":"<p><strong>Background: </strong>Advanced health technologies that emerge with the development of technology have an impact on health systems. This study aimed to determine the effects of these technologies on Türkiye's health system and present policy recommendations to reshape Türkiye's health system and policies accordingly.</p><p><strong>Methods: </strong>Interviews were conducted with senior managers, bureaucrats, policy-makers and decision-makers from seven different institutions on the subject. Content analysis was performed on the data obtained and evaluative categories were established.</p><p><strong>Results: </strong>It was concluded that these technologies would not have a positive impact on two identified themes, a negative impact on seven themes and a predominant impact on five themes in Türkiye.</p><p><strong>Conclusions: </strong>To adapt to the new health ecosystem in Türkiye, it is recommended to increase digital literacy, conduct economic evaluations of technologies, promote domestic production, ensure up-to-date follow-up, collaborate with the engineering field, enhance health technology evaluation practices, improve access to technologies and ensure that the infrastructures of health institutions are compatible with technologies. Various policy suggestions have been presented for the development of Türkiye's health system.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"147"},"PeriodicalIF":3.6,"publicationDate":"2024-10-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11520842/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142545124","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":"Data protection legislation in Africa and pathways for enhancing compliance in big data health research.","authors":"Nchangwi Syntia Munung, Ciara Staunton, Otshepeng Mazibuko, P J Wall, Ambroise Wonkam","doi":"10.1186/s12961-024-01230-7","DOIUrl":"https://doi.org/10.1186/s12961-024-01230-7","url":null,"abstract":"<p><strong>Background: </strong>The increasing availability of large volumes of personal data from diverse sources such as electronic health records, research programmes, commercial genetic testing, national health surveys and wearable devices presents significant opportunities for advancing public health, disease surveillance, personalized medicine and scientific research and innovation. However, this potential is hampered by a lack of clarity related to the processing and sharing of personal health data, particularly across varying national regulatory frameworks. This often leaves researcher stakeholders uncertain about how to navigate issues around secondary data use, repurposing data for different research objectives and cross-border data sharing.</p><p><strong>Method: </strong>We analysed 37 data protection legislation across Africa to identify key principles and requirements for processing and sharing of personal health and genetic data in scientific research. On the basis of this analysis, we propose strategies that data science research initiatives in Africa can implement to ensure compliance with data protection laws while effectively reusing and sharing personal data for health research and scientific innovation.</p><p><strong>Results: </strong>In many African countries, health and genetic data are categorized as sensitive and subject to stricter protection. Key principles guiding the processing of personal data include confidentiality, non-discrimination, transparency, storage limitation, legitimacy, purpose specification, integrity, fairness, non-excessiveness, accountability and data minimality. The rights of data subjects include the right to be informed, the right of access, the right to rectification, the right to erasure/deletion of data, the right to restrict processing, the right to data portability and the right to seek compensation. Consent and adequacy assessments were the most common legal grounds for cross-border data transfers. However, considerable variation exists in legal requirements for data transfer across countries, potentially creating barriers to collaborative health research across Africa.</p><p><strong>Conclusions: </strong>We propose several strategies that data science research initiatives can adopt to align with data protection laws. These include developing a standardized module for safe data flows, using trusted data environments to minimize cross-border transfers, implementing dynamic consent mechanisms to comply with consent specificity and data subject rights and establishing codes of conduct to govern the secondary use of personal data for health research and innovation.</p>","PeriodicalId":12870,"journal":{"name":"Health Research Policy and Systems","volume":"22 1","pages":"145"},"PeriodicalIF":3.6,"publicationDate":"2024-10-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11479556/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142463358","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}