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A Literature Perspective of Stakeholder’s Perceptions of Value and Risks for the Secondary Use of Health Data

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Abstract

Scientific literature and practice emphasize the need for a robust framework for the secondary use of health data, one that unifies standards and practices. Multiple reviews focus on secondary health data use from the technological perspective; thus, reviews combining the value and risks expectations from the perspectives of stakeholders are abundant. This study assessed the value expectations and risks perceived by patients, researchers, medical professionals, and decision-makers. The study identified that there are overlapping areas of expected value/benefits and risks, but in addition, each stakeholder has its unique expectations. Thus, only addressing common and unique expectations can enhance value creation in healthcare through the secondary use of health data. Based on these findings, we propose a conceptual model for governing the secondary use of health data. We advocate for data governance to be a continuous, transparent, and collaborative process where all stakeholders have a voice and can influence decision-making.

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References

  1. Sermontyte-Baniule R, Pundziene A, Gimenez V, Narbon-Perpina I. Role of cultural dimensions and dynamic capabilities in the value-based performance of digital healthcare services. Technol Forecast Soc Change. 2022;176: 121490. https://doi.org/10.1016/j.techfore.2022.121490.

    Article  Google Scholar 

  2. Murray E, Hekler EB, Andersson G, Collins LM, Doherty A, Hollis C, et al. Evaluating digital health interventions: key questions and approaches. Am J Prev Med. 2016;51:843–51. https://doi.org/10.1016/j.amepre.2016.06.008.

    Article  PubMed  PubMed Central  Google Scholar 

  3. Alami H, Lehoux P, Gagnon M-P, Fortin J-P, Fleet R, Ag Ahmed MA. Rethinking the electronic health record through the quadruple aim: time to align its value with the health system. BMC Med Inform Decis Mak. 2020;20:32. https://doi.org/10.1186/s12911-020-1048-9.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Felgner S, Ex P, Henschke C. Physicians’ decision making on adoption of new technologies and role of coverage with evidence development: a qualitative study. Value Health. 2018;21:1069–76. https://doi.org/10.1016/j.jval.2018.03.006.

    Article  PubMed  Google Scholar 

  5. Raghupathi W, Raghupathi V. Big data analytics in healthcare: promise and potential. Health Inf Sci Syst. 2014;2:3. https://doi.org/10.1186/2047-2501-2-3.

    Article  PubMed  PubMed Central  Google Scholar 

  6. Kohli R, Tan SSL. Electronic health records: how can IS researchers contribute to transforming healthcare? MIS Q. 2016;40:553–74.

    Article  Google Scholar 

  7. Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC, et al. Toward a national framework for the secondary use of health data: an American medical informatics association white paper. J Am Med Inform Assoc. 2007;14:1–9. https://doi.org/10.1197/jamia.M2273.

    Article  PubMed  PubMed Central  Google Scholar 

  8. Busch T, Hamprecht J, Waddock S. Value(s) for whom? Creating value(s) for stakeholders. Organ Environ. 2018;31:210–22.

    Article  Google Scholar 

  9. Otto B. Organizing data governance: findings from the telecommunications industry and consequences for large service providers. Commun Assoc Inf Syst. 2011;29:3. https://doi.org/10.17705/1CAIS.02903.

    Article  Google Scholar 

  10. Aguboshim FC, Obiokafor IN, Ezeife JE. Revamping Nigeria’s economy through sustainable data governance. World J Adv Res Rev. 2022;14:616–23. https://doi.org/10.30574/wjarr.2022.14.1.0398.

    Article  Google Scholar 

  11. Abraham R, Schneider J, Brocke J. Data governance: a conceptual framework, structured review, and research agenda. Int J Inf Manag. 2019;49:424–38.

    Article  Google Scholar 

  12. Marelli L, Lievevrouw E, Van Hoyweghen I. Fit for purpose? The GDPR and the governance of European digital health. Policy Stud. 2020;41:447–67. https://doi.org/10.1080/01442872.2020.1724929.

    Article  Google Scholar 

  13. Carretero AG, Gualo F, Caballero L, Piattini M. MAMD 2.0: environment for data quality processes implementation based on ISO-8000-6X and ISO/IEC 33000. Comput Stand Interfaces. 2017;54:139–51.

    Article  Google Scholar 

  14. Zhang Q, Sun X, Zhang M. Data matters: a strategic action framework for data governance. Inf Manag. 2022;59: 103642.

    Article  Google Scholar 

  15. Yang L, Ene IC, Arabi Belaghi R, Koff D, Stein N, Santaguida P. Stakeholders’ perspectives on the future of artificial intelligence in radiology: a scoping review. Eur Radiol. 2022;32:1477–95. https://doi.org/10.1007/s00330-021-08214-z.

    Article  PubMed  Google Scholar 

  16. Palanisamy V, Thirunavukarasu R. Implications of big data analytics in developing healthcare frameworks—a review. J King Saud Univ Comput Inf Sci. 2019;31:415–25. https://doi.org/10.1016/j.jksuci.2017.12.007.

    Article  Google Scholar 

  17. Agrawal A, Kosgi S. Healthcare access. Norderstedt: BoD—Books on Demand; 2022.

    Book  Google Scholar 

  18. Stanberry B. Telemedicine: frictions and opportunities in the 21st century. J Intern Med. 2000;247:615–28. https://doi.org/10.1046/j.1365-2796.2000.00699.x.

    Article  CAS  PubMed  Google Scholar 

  19. Coulter A, Locock L, Ziebland S, Calabrese J. Collecting data on patient experience is not enough: they must be used to improve care. BMJ. 2014;348: g2225. https://doi.org/10.1136/bmj.g2225.

    Article  PubMed  Google Scholar 

  20. Andreu-Perez J, Poon CCY, Merrifield RD, Wong STC, Yang G-Z. Big data for health. IEEE J Biomed Health Inform. 2015;19:1193–208. https://doi.org/10.1109/JBHI.2015.2450362.

    Article  PubMed  Google Scholar 

  21. Renjith V, Yesodharan R, Noronha JA, Ladd E, George A. Qualitative methods in health care research. Int J Prev Med. 2021;12:20. https://doi.org/10.4103/ijpvm.IJPVM_321_19.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Yip C, Han NLR, Sng BL. Legal and ethical issues in research. Indian J Anaesth. 2016;60:684–8. https://doi.org/10.4103/0019-5049.190627.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Pinto C, van Gool C, Cascini F. Why health is a special case for data governance. TEHDAS—Towards European Health Data Space; 2021.

  24. O.E.C.D. Health data governance: privacy, monitoring and research, OECD health policy studies. 2015. https://doi.org/10.1787/9789264244566-en.

  25. Ratia M, Myllärniemi J, Helander N. The new era of business intelligence: big data potential in the private health care value creation. Meditari Account Res. 2018;26(3):531–46.

    Article  Google Scholar 

  26. Sidorchuk R. The concept of “value” in the theory of marketing. Asian Soc Sci. 2015;11:320–5. https://doi.org/10.5539/ass.v11n9p320.

    Article  Google Scholar 

  27. Vargo SL, Maglio PP, Akaka MA. On value and value co-creation: a service systems and service logic perspective. Eur Manag J. 2008;26:145–52. https://doi.org/10.1016/j.emj.2008.04.003.

    Article  Google Scholar 

  28. Karababa E, Kjeldgaard D. Value in marketing: toward sociocultural perspectives. Mark Theory. 2014;14:119–27. https://doi.org/10.1177/1470593113500385.

    Article  Google Scholar 

  29. Helander N, Kukko M. A value-creating network analysis from software business. Int J Manag Mark Res. 2009;2:73–88.

    Google Scholar 

  30. Porter ME. What is value in health care? N Engl J Med. 2010;363:2477–81. https://doi.org/10.1056/NEJMp1011024.

    Article  CAS  PubMed  Google Scholar 

  31. Lakdawalla DN, Doshi JA, Garrison LP, Phelps CE, Basu A, Danzon PM. Defining elements of value in health care—a health economics approach: an ISPOR Special Task Force report [3]. Value Health. 2018;21:131–9. https://doi.org/10.1016/j.jval.2017.12.007.

    Article  PubMed  Google Scholar 

  32. Aitken M, Jorre J, Pagliari C, Jepson R, Cunningham-Burley S. Public responses to the sharing linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies. BMC Med Ethics. 2016;17:1–24.

    Article  Google Scholar 

  33. Skovgaard L, Wadmann S, Hoeyer K. A review of attitudes towards the reuse of health data among people in the European Union: the primacy of purpose and the common good. Health Policy. 2019;123:564–71.

    Article  PubMed  PubMed Central  Google Scholar 

  34. Perrin Z, Mathieu L. Citizen’s perception of and engagement with health data secondary use and sharing in Europe—a literature review. TEHDAS—Towards European Health Data Space; 2021.

  35. Kalkman S, Delden J, Banerjee A, Tyl B, Mosterts M, Thiel G. Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence. J Med Ethics. 2022;48:3–13.

    Article  PubMed  Google Scholar 

  36. Dash S, Shakyawar SK, Sharma M, Kaushik S. Big data in healthcare: management, analysis and future prospects. J Big Data. 2019;6:54. https://doi.org/10.1186/s40537-019-0217-0.

    Article  Google Scholar 

  37. Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. 2008;8:45. https://doi.org/10.1186/1471-2288-8-45.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Audrey S, Brown L, Campbell R, Boyd A, Macleod J. Young people’s views about consenting to data linkage: findings from the PEARL qualitative study. BMC Med Res Methodol. 2016;16:1–13.

    Article  Google Scholar 

  39. Grande D, Mitra N, Shah A, Wan F, Asch D. Public preferences about secondary uses of electronic Citationhealth information. JAMA Inter Med. 2013;173:1798–806.

    Article  Google Scholar 

  40. Karampela M, Ouhbi S, Isomursu M. Connected health user willingness to share personal health data: questionnaire study. J Med Internet Res. 2019;21: e14537.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Evans E, Delorme E, Cyr K, Goldstein D. A qualitative study of big data and the opioid epidemic: recommendations for data governance. BMC Med Ethics. 2020;21:1–13.

    Article  Google Scholar 

  42. Tully M, Hassan L, Oswald M, Ainsworth J. Commercial use of health data—a public “trial” by citizens’ jury. Learn Health Syst. 2018;3:10200.

    Article  Google Scholar 

  43. Spencer K, Sanders C, Whitley EA, Lund D, Kaye J, Dixon WG. Patient perspectives on sharing anonymized personal health data using a digital system for dynamic consent and research feedback: a qualitative study. J Med Internet Res. 2016;18:5011.

    Article  Google Scholar 

  44. Adanijo A, McWilliams C, Wykes T, Jilka S. Investigating mental health service user opinions on clinical data sharing; qualitative focus group study. JMIR Ment Health. 2021;8: e30596.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Velarde MCR, Tsantoulis P, Burton-Jeangros C, Aceti M, Chappuis P, Hurst-Majno S. Citizens’ views on sharing their health data: the role of competence, reliability and pursuing the common good. BMC Med Ethics. 2021;22:1–12.

    Google Scholar 

  46. Colombo C, Roberto A, Krieza-Jeric K, Parmelli E, Banzi R. Sharing individual participant data from clinical studies: a cross-sectional online survey among Italian patient and citizen groups. BMJ Open. 2019;2019(9): e024863.

    Article  Google Scholar 

  47. Johansson J, Bentzen H, Shah N, Haraldsdottir E, Jonsdottir A, Kaye J, et al. Preference of the public for sharing health data: discrete choice experiment. JMIR Med Inf. 2021;l9:29614.

    Article  Google Scholar 

  48. Manhas KP, Dodd SX, Page S, Letourneau N, Adair CE, Cui X, et al. Sharing longitudinal, non-biological birth cohort data: a cross-sectional analysis of parent consent preferences. BMC Med Inform Decis Mak. 2018;18:1–11.

    Article  Google Scholar 

  49. Mbuthia D, Molyneux S, Njue M, Mwalukore S, Marsh V. Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems. BMC Med Ethics. 2019;20:1–16.

    Article  Google Scholar 

  50. Jao I, Kombe F, Mwalukore S, Bull S, Parker M, Kamuya D, et al. Involving research stakeholders in developing policy on sharing public health research data in Kenya: views on fair process for informed consent, access oversight and community engagement. J Empir Res Hum Res Ethics. 2015;19:264–77.

    Article  Google Scholar 

  51. Neves AL, Poovendran D, Freise L, Ghafur S, Flott K, Darzi A, et al. Health care professionals’ perspectives on the secondary use of health records to improve quality and safety of care in England: qualitative study. J Med Internet Res. 2019;21:14135.

    Article  Google Scholar 

  52. Hate K, Meherally S, More N, Jayaraman A, Bull S, Parker M, et al. Sweat, skepticism, and uncharted territory: a qualitative study of opinions on data sharing among public health researchers and research participants in Mumbai, India. J Empir Res Hum Res Ethics. 2015;10:239–50.

    Article  PubMed  PubMed Central  Google Scholar 

  53. Mazor KM, Richards A, Gallagher M, Arterburn DE, Raebel MA, Nowell WB, et al. Stakeholders’ views on data sharing in multicenter studies. J Comp Eff Res. 2017;6:537–47.

    Article  PubMed  Google Scholar 

  54. Cheah P, Jatupompimol N, Hanboonkunupakam B, Khirikoekkong N, Jittamala P, Pukrittayakamee S, et al. Challenges arising when seeking broad consent for health research data sharing: a qualitative study of perspectives in Thailand. BMC Med Ethics. 2018;19:68.

    Article  Google Scholar 

  55. Seltzer E, Goldshear J, Guntuku SC, Grande D, Asch DA, Klinger EV, et al. Patients’ willingness to share digital health and non-health data for research: a cross-sectional study. BMC Med Inform Decis Mak. 2019;19:1–8.

    Article  Google Scholar 

  56. McCormick JB, Hopkins MA. Exploring public concerns for sharing and governance of personal health information: a focus group study. JAMIA Open. 2021;4:098.

    Article  Google Scholar 

  57. Shah N, Coathup V, Teare H, Forgie I, Giordano GN, Hansen TH, et al. Motivations for data sharing—views of research participants from four European countries: a DIRECT study. Eur J Hum Genet. 2019;27:721–9.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Ballantyne A, Moore A, Bartholomew K, Aagaard N. Points of contention: qualitative research identifying where researchers and research ethics committees disagree about consent waivers for secondary research with tissue and data. PLoS ONE. 2020;15:0235618.

    Article  Google Scholar 

  59. Kim K, Joseph J, Ohno-Machado L. Comparison of consumers’ views on electronic data sharing for healthcare and research. J Am Med Inf Assoc. 2015;22:821–30.

    Article  Google Scholar 

  60. Stevenson F. The use of electronic patient records for medical research: conflicts and contradictions. BMC Health Serv Res. 2015;15:1–8.

    Article  Google Scholar 

  61. Williams H, Spencer K, Sanders C, Lund D, Whitley E, Kaye J, et al. Dynamic consent: a possible solution to improve patient confidence and trust in how electronic patient records are used in medical research. JMIR Med Inform. 2015;3: e3525.

    Article  Google Scholar 

  62. Danciu I, Cowan JD, Basford M, Wang X, Saip A, Osgood S, et al. Secondary use of clinical data: the Vanderbilt approach. J Biomed Inform. 2014;52:28–35. https://doi.org/10.1016/j.jbi.2014.02.003.

    Article  PubMed  PubMed Central  Google Scholar 

  63. Näher A-F, Vorisek CN, Klopfenstein SAI, Lehne M, Thun S, Alsalamah S, et al. Secondary data for global health digitalisation. Lancet Digit Health. 2023;5:e93-101. https://doi.org/10.1016/S2589-7500(22)00195-9.

    Article  PubMed  Google Scholar 

  64. Kim KK, Browe DK, Logan HC, Holm R, Hack L, Ohno-Machado L. Data governance requirements for distributed clinical research networks: triangulating perspectives of diverse stakeholders. J Am Med Inform Assoc. 2014;21:714–9. https://doi.org/10.1136/amiajnl-2013-002308.

    Article  PubMed  Google Scholar 

  65. Strauss A, Corbin J. Basics of qualitative research. 2nd ed. Newbury Park: Sage; 1998.

    Google Scholar 

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Funding

The study is part of the DiHeco project, which has received funding from the European Union's Horizon 2020 and innovation programme under grant agreement No. 952012.

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Authors and Affiliations

  1. School of Economics and Business, Kaunas University of Technology, Kaunas, Lithuania

    Rima Sermontyte-Baniule

  2. Faculty of Management and Business, Tampere University, Tampere, Finland

    Nina Helander

  3. Faculty of Medicine and Health Technology, Tampere University, Tampere, Finland

    Hannu Nieminen

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  1. Rima Sermontyte-Baniule
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  3. Hannu Nieminen
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Correspondence to Rima Sermontyte-Baniule.

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This article is part of the topical collection “Advances on Knowledge Discovery, Knowledge Engineering and Knowledge Management” guest edited by Joaquim Filipe, Ana Fred, Frans Coenen, Jorge Bernardino and Elio Masciari.

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Sermontyte-Baniule, R., Helander, N. & Nieminen, H. A Literature Perspective of Stakeholder’s Perceptions of Value and Risks for the Secondary Use of Health Data. SN COMPUT. SCI. 5, 295 (2024). https://doi.org/10.1007/s42979-024-02633-7

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