CHALLENGES AND FACILITATORS TO THE SECONDARY USE OF ROUTINELY COLLECTED ORAL HEALTH DATA FROM MULTIPLE EUROPEAN COUNTRIES

Year 2021, , 315 - 328, 29.12.2021

Heather Leggett , Frank Fox Karen Vinall Collier Julia Ciskar Evangelos Zormpas Helen Whelton Gail Douglas

https://doi.org/10.33457/ijhsrp.928957

Abstract

This research aimed to identify and explore perceived challenges and facilitators to acquiring routinely collected oral healthcare data for research in six European countries with the aim of generating practical solutions for future initiatives. Seventeen participants from the UK, Denmark, Germany, Hungary, Ireland and the Netherlands participated who were either data requestors or data providers for the ADVOCATE project. Focus groups using the nominal group technique were undertaken using PESTLE as a theoretical framework to guide the discussion. The data were analysed using content analysis. Four main challenges were identified: 1) legality rules influencing the data available, 2) variations in data standardisation/coding between countries, 3) relationships and responsibilities between stakeholders, and 4) data not available for secondary use. The facilitators included: 1) having a framework in place to guide the process, 2) having strong relationships between stakeholders, 3) having technical elements in place to support the process, and 4) taking a pragmatic approach to the available data. It is hoped that identifying these challenges will raise awareness of potential issues for undertaking such research and that tackling these and building on the facilitators will establish stronger foundations for the sharing of data within and across disciplines and countries.

Keywords

policy, big data, secondary data analysis, health services research, qualitative

Supporting Institution

The University of Leeds

Project Number

The ADVOCATE project has received funding from the European Commission’s Horizon 2020 research and innovation program under Grant Agreement 635183:

Thanks

This research was undertaken as part of the ADVOCATE project (Added Value for Oral Care). The ADVOCATE project has received funding from the European Commission’s Horizon 2020 research and innovation program under Grant Agreement 635183: http://advocateoralhealth.com. We would like to thank our participants for their valuable contributions and our colleagues Mr Owen Johnson, Dr Jonathon Fistein and Mr Andrew Taylor for their assistance during the workshop and Dr Pat Leggett for offering comments a draft manuscript.

References

• [1] Danciu, I., et al., "Secondary use of clinical data: the Vanderbilt approach," Journal of biomedical informatics, 52, 28-35, 2014.
• [2] Raghupathi, W., Raghupathi, V. "Big data analytics in healthcare: promise and potential" Health information science and systems,2(1), 3, 2014.
• [3] Safran, C., et al., "Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper," Journal of the American Medical Informatics Association, 14(1), 1-9, 2007.
• [4] Auffray, C., et al., "Making sense of big data in health research: Towards an EU action plan," Genome Medicine, 8(1), 71, 2016. /doi: 10.1186/s13073-016-0323-y.
• [5] Border, P., "Big Data and Public health", POSTnote, UK Parliment, 2014: Available: http://researchbriefings.parliament.uk/ResearchBriefing/Summary/POST-PN-474
• [6] European Commission, "The Use of Big Data in Public Health Policy and Research" 2014.
• [7] European Commission, "eHealth action plan 2012-2020: innovative healthcare for the 21st century," Communication from the commission to the European parliament, the council, the European economic and social committee and the committee of the regions. Brussels, 2012.
• [8] Habl, C., Renner, A., Bobek, J., Laschkolnig, A. "Study on Big Data in Public Health, Telemedicine and Healthcare" European Commission, 2016.
• [9] Pastorino, R., et al., "Benefits and challenges of Big Data in healthcare: an overview of the European initiatives," European Journal of Public Health, 29, 23-27, 2019.
• [10] Big data for better outcomes., "About BD4BO." https://bd4bo.eu/index.php/about-the-programme/about-bd4bo/ (accessed 4.02.2020).
• [11] EHDEN. "European Health Data & Evidence Network." https://www.ehden.eu/ (accessed 04.02.2020.
• [12] Bourne, P.E, et al., "The NIH big data to knowledge (BD2K) initiative," Journal of the American Medical Informatics Association, 22(6), 1114-1114, 2015.
• [13] Leggett, H., et al., "Toward more patient-centered and prevention-oriented oral health care: the ADVOCATE project," JDR Clinical & Translational Research, 2(1),5-9, 2017.
• [14] Day, G.S., "Market driven strategy: process for creating value: with a new information." Free, 1999.
• [15] Basu, R., "Implementing quality: a practical guide to tools and techniques: enabling the power of operational excellence", Cengage Learning EMEA, 2004.
• [16] Van Panhuis, W.G., et al., "A systematic review of barriers to data sharing in public health," BMC public health, 14(1), 1-9, 2014.
• [17] Edelstein, M., Sane, J., "Overcoming Barriers to Data Sharing in Public Health: A Global Perspective," Chathamhouse.org. [Online]. Available: https://www.chathamhouse.org/publication/overcoming-barriers-data-sharing-public-health-global-perspective
• [18] Haux, C., et al., "A process model for acquiring international administrative routine data for health services research," GMS Medizinische Informatik, Biometrie Und Epidemiologie (online), 15(1), 2019.
• [19] Horton, J., "Nominal group technique: A method of decision‐making by committee," Anaesthesia, 35(8), 811-814, 1980.
• [20] Delbecq, A.L., Van de Ven, A.H., "A group process model for problem identification and program planning," The Journal of applied behavioral science, 7(4), 466-492, 1971.
• [21] Center for Disease Control and Prevention, "Gaining Consensus Among Stakeholders Through the Nominal Group Technique.," 7, U.S. Department of helath and Human Services, 2018. https://www.cdc.gov/HealthyYouth/evaluation/pdf/brief7.pdf
• [22] Mayring,P., "Qualitative content analysis," A companion to qualitative research, 1, 159-176, 2004.
• [23] Elo, S., Kyngäs, H., "The qualitative content analysis process.," Journal of Advanced Nursing, 62(1), 107-115, 2008.
• [24] Cornet, R., de Keizer, N., "Forty years of SNOMED: a literature review," in BMC medical informatics and decision making, 8(1), S2, 2008.
• [25] W. G. Van Panhuis., W.G., et al., "A systematic review of barriers to data sharing in public health," BMC public health, 14(1), 1144, 2014.
• [26] Patti DiGangi, R., "Dental Electronic Health Records: Meaningful and Useful," RDH, 2012.
• [27] Cantrill, J., et al., "The Delphi and nominal group techniques in health services research," International Journal of pharmacy practice, 4(2), 67-74, 1996.
• [28] Brown, S.R., "Q methodology and qualitative research," Qualitative health research, 6(4), 561-567, 1996.
• [29] Wengraf, T., Qualitative research interviewing: Biographic narrative and semi-structured methods. Sage, 2001.