Skip to main content
Top

2024 | OriginalPaper | Chapter

Operationalizing the Use of Existing Data in Support of Biomedical Research and Innovation: An Inclusive and Sustainable Approach

Author : Helen Yu

Published in: The Law and Ethics of Data Sharing in Health Sciences

Publisher: Springer Nature Singapore

Activate our intelligent search to find suitable subject content or patents.

search-config
loading …

Abstract

Advancements in science and technology has created an expectation and demand on research and innovation to address some of the greatest societal challenges, particularly in the health and biomedical fields. There is an inherent promise associated with the potential of breakthrough technologies, particularly when combined with quality health-related data, to deliver significant improved health outcomes globally. However, science and innovation alone are not sufficient to achieve societal transformation towards global health. There is an observed reluctance to operationalize the use of existing data, mainly due to privacy and security concerns, as well as a palpable apprehension around how, for what purpose, and by whom data will be used. Research and innovation need to be supported by behavior and attitude change in order to foster inclusive participation and effective societal uptake of the resulting solutions. This chapter explores how the principles of Responsible Research and Innovation can be applied to provide a legally supported, inclusive, and sustainable approach to operationalizing the use of existing data in support of health-related innovations. By incorporating a deliberative and responsive process to citizen science practices, the root causes underlying this observed reluctance can be identified and addressed. The overall aim is to gain a fundamental understanding of the real and perceived barriers to utilizing data for research and innovation purposes, which can then be used to proffer solutions to create a responsive and inclusive culture to sustainably support the ongoing responsible use of data.

Dont have a licence yet? Then find out more about our products and how to get one now:

Springer Professional "Wirtschaft+Technik"

Online-Abonnement

Mit Springer Professional "Wirtschaft+Technik" erhalten Sie Zugriff auf:

  • über 102.000 Bücher
  • über 537 Zeitschriften

aus folgenden Fachgebieten:

  • Automobil + Motoren
  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Elektrotechnik + Elektronik
  • Energie + Nachhaltigkeit
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Maschinenbau + Werkstoffe
  • Versicherung + Risiko

Jetzt Wissensvorsprung sichern!

Springer Professional "Wirtschaft"

Online-Abonnement

Mit Springer Professional "Wirtschaft" erhalten Sie Zugriff auf:

  • über 67.000 Bücher
  • über 340 Zeitschriften

aus folgenden Fachgebieten:

  • Bauwesen + Immobilien
  • Business IT + Informatik
  • Finance + Banking
  • Management + Führung
  • Marketing + Vertrieb
  • Versicherung + Risiko




Jetzt Wissensvorsprung sichern!

Footnotes
1
See, e.g., Vos et al. (2020), pp. 1204–1222; Goldman et al. (2005), pp. W5–R5.
 
2
Murray et al. (2020), pp. 1135–1159.
 
3
World Health Organization (2022).
 
4
Florent (2020), p. 1129.
 
5
See, e.g., Abegunde et al. (2007), pp. 1929–1938; Proksch et al. (2019), pp. 169–179.
 
6
See, e.g., Coorevits et al. (2013), pp. 547–560; Groves et al. (2016), pp. 1–20; Adibuzzaman et al. (2017), p. 384. American Medical Informatics Association; Bonander and Gates (2010), p. e1346.
 
7
See e.g., World Health Organization (2015); World Health Organization (2020b).
 
8
O’Neill (2016).
 
9
See, e.g., Bax et al. (2001), pp. 316–325; Thakur et al. (2012), pp. 562–569; Jirotka et al. (2005), pp. 369–398.
 
10
See, e.g., Kalra et al. (2017), pp. 1–8; Issa, Byers and Dakshanamurthy (2014), pp. 293–298; Hemerly (2013), pp. 25–31.
 
11
See, e.g., Kalra et al. (2017), pp. 1–8; Issa, Byers and Dakshanamurthy (2014), pp. 293–298; Hemerly (2013), pp. 25–31.
 
12
Yu (2016), pp. 611–635.
 
13
World Health Organization (2020a).
 
14
Houe (2019), pp. 1–8.
 
15
Yu (2016), pp. 611–635.
 
16
Yu (2016), pp. 611–635.
 
17
Kaye and Hawkins (2014), pp. 1–8.
 
18
Dias and Duarte (2015), pp. 230–236.
 
19
See, e.g., Den Broeder et al. (2018), pp. 505–514; Ciasullo et al. (2022), pp. 365–392; Heyen et al. (2022), pp. 1–24.
 
20
Dunn et al. (2018), pp. 429–448.
 
21
Piwek et al. (2016), pp. 1–9.
 
22
See, e.g., Saura et al. (2021), pp. 1–13; Pisani and AbouZahr (2010), pp. 462–466; Van Panhuis et al. (2014), pp. 1–9.
 
23
Hemerly (2013), pp. 25–31.
 
24
Hemingway et al. (2018), pp. 1481–1495.
 
25
See, e.g., Seh et al. (2020), p. 133.
 
26
NEJM Catalyst (2018).
 
27
Hemerly (2013), pp. 25–31.
 
28
European Commission (2018).
 
29
See, e.g., Appari and Johnson (2010), pp. 279–314; Malin et al. (2013), pp. 2–6; Haas et al. (2011), pp. 26–31; Kruse et al. (2017), pp.1–9; Chhanabhai and Holt (2007), p. 8; Barrows and Clayton (1996), pp. 139–148; OECD (2021).
 
30
See, e.g., European Commission (2020); European Commission (2017); Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation); Directive (EU) 2019/790 of the European Parliament and of the Council of 17 April 2019 on copyright and related rights in the Digital Single Market and amending Directives 96/9/EC and 2001/29/EC (Text with EEA relevance.) PE/51/2019/REV/1; Proposal for a Regulation of the European Parliament and of the Council on harmonised rules on fair access to and use of data (Data Act) CON/2022/68 final.
 
31
European Commission (2022a).
 
32
European Commission (2022b).
 
33
Johnston (2006), pp. 1–32; Hickey and King (2016), pp. 1225–1240.
 
34
Joshi (2017), pp. 160–172; Boydell et al. (2019), pp. 1–6.
 
35
Stockdale et al. (2018), pp. 1–25; Howe et al. (2018), pp. 123–133.
 
36
Halperin (2011), pp. 45–76.
 
37
Visschers and Siegrist (2008), pp. 156–167.
 
38
Strasser et al. (2019), pp. 52–76.
 
39
RRI Tools, https://​www.​rri-tools.​eu/​about-rri. Accessed 4 September 2022.
 
40
Macq et al. (2020), pp. 489–512.
 
41
Zwart et al. (2014), p. 11.
 
42
Von Schomberg and Blok (2021), pp. 309–323.
 
43
See, e.g., Blok and Lemmens (2015), pp. 19–35; Åm (2019), pp. 163–178; Owen and Pansera (2019), pp. 26–48.
 
44
Smallman (2018), pp. 241–253.
 
45
Stilgoe et al. (2013), pp. 1568–1580.
 
46
Novitzky et al. (2020), pp. 39–41.
 
47
Brown and Wyatt (2010), pp. 29–43; Roberts et al. (2016), pp. 11–14.
 
48
Park and Kim (2014), pp. 376–385; Jelsma (2006).
 
49
Miller and Sim (2004), pp. 116–126.
 
50
Jakku et al. (2019), pp. 1–13; Holden and Karsh (2009), pp. 21–38.
 
51
Dryzek et al. (2019), pp. 1144–1146.
 
52
OECD (2020).
 
53
Bächtiger et al. (2018).
 
54
Ercan et al. (2019), pp. 19–36.
 
55
Von Schomberg (2013), pp. 51–74.
 
56
Irwin (2006), pp. 299–320.
 
57
World Health Organization (2020a, b).
 
58
Shay and Lafata (2015), pp. 114–131; Elwyn et al. (2015), pp. 1–10.
 
59
Hahn et al. (2017), pp. 290–295.
 
60
Frahm et al. (2022), pp. 174–216; Domecq et al. (2014), pp. 1–9.
 
61
Irwin (2001), pp. 1–18; van Oudheusden (2014), pp. 67–86; Owen et al. (2021), pp. 217–233.
 
62
Yu (2016), pp. 611–635; Lehoux et al. (2008), pp. 251–254.
 
63
Ribeiro et al. (2018), pp. 316–331.
 
64
Griggs et al. (2014).
 
65
Yu (2016), pp. 611–635; Lehoux et al. (2008), pp. 251–254.
 
66
Bajmócy and Pataki (2019).
 
67
Hartley et al. (2017), pp. 361–377.
 
68
Hartley et al. (2017), pp. 361–377.
 
69
Van Panhuis et al. (2014), pp. 1–9.
 
70
Andanda (2013), pp. 140–177.
 
71
Günther et al. (2017), pp. 191–209.
 
72
Hulsen (2020), p. 3046.
 
Literature
go back to reference Abegunde DO, Mathers CD, Adam T, Ortegon M, Strong K (2007) The burden and costs of chronic diseases in low-income and middle-income countries. Lancet 370(9603):1929–1938CrossRef Abegunde DO, Mathers CD, Adam T, Ortegon M, Strong K (2007) The burden and costs of chronic diseases in low-income and middle-income countries. Lancet 370(9603):1929–1938CrossRef
go back to reference Adibuzzaman M, DeLaurentis P, Hill J, Benneyworth BD (2017) Big data in healthcare–the promises, challenges and opportunities from a research perspective: a case study with a model database. In: AMIA annual symposium proceedings. p 384 Adibuzzaman M, DeLaurentis P, Hill J, Benneyworth BD (2017) Big data in healthcare–the promises, challenges and opportunities from a research perspective: a case study with a model database. In: AMIA annual symposium proceedings. p 384
go back to reference Åm H (2019) Limits of decentered governance in science-society policies. J Responsible Innov 6(2):163–178CrossRef Åm H (2019) Limits of decentered governance in science-society policies. J Responsible Innov 6(2):163–178CrossRef
go back to reference Andanda P (2013) Managing intellectual property rights over clinical trial data to promote access and benefit sharing in public health. IIC-Int Rev Intellect Prop Compet Law 44(2):140–177 Andanda P (2013) Managing intellectual property rights over clinical trial data to promote access and benefit sharing in public health. IIC-Int Rev Intellect Prop Compet Law 44(2):140–177
go back to reference Appari A, Johnson ME (2010) Information security and privacy in healthcare: current state of research. Int J Internet Enterp Manag 6(4):279–314CrossRef Appari A, Johnson ME (2010) Information security and privacy in healthcare: current state of research. Int J Internet Enterp Manag 6(4):279–314CrossRef
go back to reference Bächtiger A, Dryzek JS, Mansbridge J, Warren ME (eds) (2018) The oxford handbook of deliberative democracy. Oxford University Press, Oxford Bächtiger A, Dryzek JS, Mansbridge J, Warren ME (eds) (2018) The oxford handbook of deliberative democracy. Oxford University Press, Oxford
go back to reference Bajmócy Z, Pataki G (2019) Responsible research and innovation and the challenges of co-creation. In: Bammé A, Getzinger G (eds) Yearbook 2018 of the institute for advanced studies on science, technology and society. Profil Verlag, München–Wien Bajmócy Z, Pataki G (2019) Responsible research and innovation and the challenges of co-creation. In: Bammé A, Getzinger G (eds) Yearbook 2018 of the institute for advanced studies on science, technology and society. Profil Verlag, München–Wien
go back to reference Barrows RC Jr, Clayton PD (1996) Privacy, confidentiality, and electronic medical records. J Am Med Inform Assoc 3(2):139–148CrossRef Barrows RC Jr, Clayton PD (1996) Privacy, confidentiality, and electronic medical records. J Am Med Inform Assoc 3(2):139–148CrossRef
go back to reference Bax R et al (2001) Surveillance of antimicrobial resistance—what, how and whither? Clin Microbiol Infect 7(6):316–325CrossRef Bax R et al (2001) Surveillance of antimicrobial resistance—what, how and whither? Clin Microbiol Infect 7(6):316–325CrossRef
go back to reference Blok V, Lemmens P (2015) The emerging concept of responsible innovation. Three reasons why it is questionable and calls for a radical transformation of the concept of innovation. In: Responsible innovation 2: concepts, approaches, and applications. pp 19–35 Blok V, Lemmens P (2015) The emerging concept of responsible innovation. Three reasons why it is questionable and calls for a radical transformation of the concept of innovation. In: Responsible innovation 2: concepts, approaches, and applications. pp 19–35
go back to reference Bonander J, Gates S (2010) Public health in an era of personal health records: opportunities for innovation and new partnerships. J Med Internet Res 12(3):e1346CrossRef Bonander J, Gates S (2010) Public health in an era of personal health records: opportunities for innovation and new partnerships. J Med Internet Res 12(3):e1346CrossRef
go back to reference Boydell V, McMullen H, Cordero J, Steyn P, Kiare J (2019) Studying social accountability in the context of health system strengthening: innovations and considerations for future work. Health Res Policy Syst 17(34):1–6 Boydell V, McMullen H, Cordero J, Steyn P, Kiare J (2019) Studying social accountability in the context of health system strengthening: innovations and considerations for future work. Health Res Policy Syst 17(34):1–6
go back to reference Brown T, Wyatt J (2010) Design thinking for social innovation. Dev Outreach 12(1):29–43CrossRef Brown T, Wyatt J (2010) Design thinking for social innovation. Dev Outreach 12(1):29–43CrossRef
go back to reference Chhanabhai P, Holt A (2007) Consumers are ready to accept the transition to online and electronic records if they can be assured of the security measures. Medscape Gen Med 9(1):8 Chhanabhai P, Holt A (2007) Consumers are ready to accept the transition to online and electronic records if they can be assured of the security measures. Medscape Gen Med 9(1):8
go back to reference Ciasullo MV, Carli M, Lim WM, Palumbo R (2022) An open innovation approach to co-produce scientific knowledge: an examination of citizen science in the healthcare ecosystem. Eur J Innov Manag 25(6):365–392CrossRef Ciasullo MV, Carli M, Lim WM, Palumbo R (2022) An open innovation approach to co-produce scientific knowledge: an examination of citizen science in the healthcare ecosystem. Eur J Innov Manag 25(6):365–392CrossRef
go back to reference Coorevits P, Sundgren M, Klein GO, Bahr A, Claerhout B, Daniel C, Dugas M, Dupont D, Schmidt A, Singleton P, De Moor G (2013) Electronic health records: new opportunities for clinical research. J Intern Med 274(6):547–560CrossRef Coorevits P, Sundgren M, Klein GO, Bahr A, Claerhout B, Daniel C, Dugas M, Dupont D, Schmidt A, Singleton P, De Moor G (2013) Electronic health records: new opportunities for clinical research. J Intern Med 274(6):547–560CrossRef
go back to reference Den Broeder L, Devilee J, Van Oers H, Schuit AJ, Wagemakers A (2018) Citizen Science for public health. Health Promot Int 33(3):505–514 Den Broeder L, Devilee J, Van Oers H, Schuit AJ, Wagemakers A (2018) Citizen Science for public health. Health Promot Int 33(3):505–514
go back to reference Dias JA, Duarte P (2015) Big data opportunities in healthcare. How can medical affairs contribute. Rev Port Farmacoter 7(4):230–236 Dias JA, Duarte P (2015) Big data opportunities in healthcare. How can medical affairs contribute. Rev Port Farmacoter 7(4):230–236
go back to reference Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P (2014) Patient engagement in research: a systematic review. BMC Health Serv Res 14(1):1–9CrossRef Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin P (2014) Patient engagement in research: a systematic review. BMC Health Serv Res 14(1):1–9CrossRef
go back to reference Dryzek JS, Bächtiger A, Chambers S, Cohen J, Druckman JN, Felicetti A, Fishkin JS, Farrell DM, Fung A, Gutmann A, Landemore H (2019) The crisis of democracy and the science of deliberation. Science 363(6432):1144–1146CrossRef Dryzek JS, Bächtiger A, Chambers S, Cohen J, Druckman JN, Felicetti A, Fishkin JS, Farrell DM, Fung A, Gutmann A, Landemore H (2019) The crisis of democracy and the science of deliberation. Science 363(6432):1144–1146CrossRef
go back to reference Dunn J, Runge R, Snyder M (2018) Wearables and the medical revolution. Pers Med 15(5):429–448CrossRef Dunn J, Runge R, Snyder M (2018) Wearables and the medical revolution. Pers Med 15(5):429–448CrossRef
go back to reference Elwyn G, Frosch DL, Kobrin S (2015) Implementing shared decision-making: consider all the consequences. Implement Sci 11(1):1–10CrossRef Elwyn G, Frosch DL, Kobrin S (2015) Implementing shared decision-making: consider all the consequences. Implement Sci 11(1):1–10CrossRef
go back to reference Ercan SA, Hendriks CM, Dryzek JS (2019) Public deliberation in an era of communicative plenty. Policy Polit 47(1):19–36CrossRef Ercan SA, Hendriks CM, Dryzek JS (2019) Public deliberation in an era of communicative plenty. Policy Polit 47(1):19–36CrossRef
go back to reference European Commission (2017) Building a European data economy. Brussels 10.1.2017 COM (2017) 9 final. European Commission (2017) Building a European data economy. Brussels 10.1.2017 COM (2017) 9 final.
go back to reference European Commission (2018) Study on emerging issues of data ownership, interoperability, (re-)usability and access to data, and liability—final report European Commission (2018) Study on emerging issues of data ownership, interoperability, (re-)usability and access to data, and liability—final report
go back to reference European Commission (2020) European data strategy. Brussels, 19.2.2020 COM (2020) 66 final European Commission (2020) European data strategy. Brussels, 19.2.2020 COM (2020) 66 final
go back to reference Florent V (2020) Global health: time for radical change. Lancet 396(874):1129 Florent V (2020) Global health: time for radical change. Lancet 396(874):1129
go back to reference Frahm N, Doezema T, Pfotenhauer S (2022) Fixing technology with society: the coproduction of democratic deficits and responsible innovation at the OECD and the European commission. Sci Technol Human Values 47(1):174–216CrossRef Frahm N, Doezema T, Pfotenhauer S (2022) Fixing technology with society: the coproduction of democratic deficits and responsible innovation at the OECD and the European commission. Sci Technol Human Values 47(1):174–216CrossRef
go back to reference Goldman DP, Shang B, Bhattacharya J, Garber AM, Hurd M, Joyce GF, Lakdawalla DN, Panis C, Shekelle PG (2005) Consequences of health trends and medical innovation for the future elderly: when demographic trends temper the optimism of biomedical advances, how will tomorrow’s elderly fare? Health Aff 24(Suppl2):W5-R5CrossRef Goldman DP, Shang B, Bhattacharya J, Garber AM, Hurd M, Joyce GF, Lakdawalla DN, Panis C, Shekelle PG (2005) Consequences of health trends and medical innovation for the future elderly: when demographic trends temper the optimism of biomedical advances, how will tomorrow’s elderly fare? Health Aff 24(Suppl2):W5-R5CrossRef
go back to reference Griggs S, Norval A, Wagenaar H (2014) Practices of freedom. Decentred governance, conflict and democratic participation. Cambridge University Press, Cambridge Griggs S, Norval A, Wagenaar H (2014) Practices of freedom. Decentred governance, conflict and democratic participation. Cambridge University Press, Cambridge
go back to reference Groves P, Kayyali B, Knott D, Kuiken SV (2016) The ‘big data’ revolution in healthcare: accelerating value and innovation. McKinsey & Company, Center for US Health System Reform Business Technology Office, pp 1–20 Groves P, Kayyali B, Knott D, Kuiken SV (2016) The ‘big data’ revolution in healthcare: accelerating value and innovation. McKinsey & Company, Center for US Health System Reform Business Technology Office, pp 1–20
go back to reference Günther WA, Mehrizi MHR, Huysman M, Feldberg F (2017) Debating big data: a literature review on realizing value from big data. J Strateg Inf Syst 26(3):191–209CrossRef Günther WA, Mehrizi MHR, Huysman M, Feldberg F (2017) Debating big data: a literature review on realizing value from big data. J Strateg Inf Syst 26(3):191–209CrossRef
go back to reference Haas S, Wohlgemuth S, Echizen I, Sonehara N, Müller G (2011) Aspects of privacy for electronic health records. Int J Med Inf 80(2):e26–e31CrossRef Haas S, Wohlgemuth S, Echizen I, Sonehara N, Müller G (2011) Aspects of privacy for electronic health records. Int J Med Inf 80(2):e26–e31CrossRef
go back to reference Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ (2017) Tokenism in patient engagement. Fam Pract 34(3):290–295 Hahn DL, Hoffmann AE, Felzien M, LeMaster JW, Xu J, Fagnan LJ (2017) Tokenism in patient engagement. Fam Pract 34(3):290–295
go back to reference Halperin JL (2011) Law in books and law in action: the problem of legal change. Maine Law Rev 64(1):45–76 Halperin JL (2011) Law in books and law in action: the problem of legal change. Maine Law Rev 64(1):45–76
go back to reference Hartley S, Pierce W, Taylor A (2017) Against the tide of depoliticisation: the politics of research governance. Policy Polit 45(3):361–377CrossRef Hartley S, Pierce W, Taylor A (2017) Against the tide of depoliticisation: the politics of research governance. Policy Polit 45(3):361–377CrossRef
go back to reference Hemerly J (2013) Public policy considerations for data-driven innovation. Computer 46(6):25–31CrossRef Hemerly J (2013) Public policy considerations for data-driven innovation. Computer 46(6):25–31CrossRef
go back to reference Hemingway H, Asselbergs FW, Danesh J, Dobson R, Maniadakis N, Maggioni A, Van Thiel GJ, Cronin M, Brobert G, Vardas P, Anker SD (2018) Big data from electronic health records for early and late translational cardiovascular research: challenges and potential. Eur Heart J 39(16):1481–1495CrossRef Hemingway H, Asselbergs FW, Danesh J, Dobson R, Maniadakis N, Maggioni A, Van Thiel GJ, Cronin M, Brobert G, Vardas P, Anker SD (2018) Big data from electronic health records for early and late translational cardiovascular research: challenges and potential. Eur Heart J 39(16):1481–1495CrossRef
go back to reference Heyen NB, Gardecki J, Eidt-Koch D, Schlangen M, Pauly S, Eickmeier O, Wagner T, Bratan T (2022) Patient science: citizen science involving chronically ill people as co-researchers. J Particip Res Methods 3(1):1–24CrossRef Heyen NB, Gardecki J, Eidt-Koch D, Schlangen M, Pauly S, Eickmeier O, Wagner T, Bratan T (2022) Patient science: citizen science involving chronically ill people as co-researchers. J Particip Res Methods 3(1):1–24CrossRef
go back to reference Hickey S, King S (2016) Understanding social accountability: politics, power and building new social contracts. J Dev Stud 52(8):1225–1240CrossRef Hickey S, King S (2016) Understanding social accountability: politics, power and building new social contracts. J Dev Stud 52(8):1225–1240CrossRef
go back to reference Holden RJ, Karsh BT (2009) A theoretical model of health information technology usage behaviour with implications for patient safety. Behav Inf Technol 28(1):21–38CrossRef Holden RJ, Karsh BT (2009) A theoretical model of health information technology usage behaviour with implications for patient safety. Behav Inf Technol 28(1):21–38CrossRef
go back to reference Houe H, Nielsen SS, Nielsen LR, Ethelberg S, Mølbak K (2019) Opportunities for improved disease surveillance and control by use of integrated data on animal and human health. Front Vet Sci 6(301):1–8 Houe H, Nielsen SS, Nielsen LR, Ethelberg S, Mølbak K (2019) Opportunities for improved disease surveillance and control by use of integrated data on animal and human health. Front Vet Sci 6(301):1–8
go back to reference Howe N, Giles E, Newbury-Birch D, McColl E (2018) Systematic review of participants’ attitudes towards data sharing: a thematic synthesis. J Health Serv Res Policy 23(2):123–133CrossRef Howe N, Giles E, Newbury-Birch D, McColl E (2018) Systematic review of participants’ attitudes towards data sharing: a thematic synthesis. J Health Serv Res Policy 23(2):123–133CrossRef
go back to reference Hulsen T (2020) Sharing is caring—data sharing initiatives in healthcare. Int J Environ Res Public Health 17(9):3046CrossRef Hulsen T (2020) Sharing is caring—data sharing initiatives in healthcare. Int J Environ Res Public Health 17(9):3046CrossRef
go back to reference Irwin A (2001) Constructing the scientific citizen: Science and democracy in the biosciences. Public Underst Sci 10(1):1–18CrossRef Irwin A (2001) Constructing the scientific citizen: Science and democracy in the biosciences. Public Underst Sci 10(1):1–18CrossRef
go back to reference Irwin A (2006) The politics of talk: coming to terms with the “new” scientific governance. Soc Stud Sci 36(2):299–320CrossRef Irwin A (2006) The politics of talk: coming to terms with the “new” scientific governance. Soc Stud Sci 36(2):299–320CrossRef
go back to reference Issa NT, Byers SW, Dakshanamurthy S (2014) Big data: the next frontier for innovation in therapeutics and healthcare. Expert Rev Clin Pharmacol 7(3):293–298lCrossRef Issa NT, Byers SW, Dakshanamurthy S (2014) Big data: the next frontier for innovation in therapeutics and healthcare. Expert Rev Clin Pharmacol 7(3):293–298lCrossRef
go back to reference Jakku E, Taylor B, Fleming A, Mason C, Fielke S, Sounness C, Thorburn P (2019) “If they don’t tell us what they do with it, why would we trust them?” Trust, transparency and benefit-sharing in smart farming. NJAS—Wagening J Life Sci 90:1–13 Jakku E, Taylor B, Fleming A, Mason C, Fielke S, Sounness C, Thorburn P (2019) “If they don’t tell us what they do with it, why would we trust them?” Trust, transparency and benefit-sharing in smart farming. NJAS—Wagening J Life Sci 90:1–13
go back to reference Jelsma J (2006) Designing ‘Moralized’ products. In: Verbeek PP, Slob A (eds) User behavior and technology development: shaping sustainable relations between consumers and technologies. Springer, Berlin Jelsma J (2006) Designing ‘Moralized’ products. In: Verbeek PP, Slob A (eds) User behavior and technology development: shaping sustainable relations between consumers and technologies. Springer, Berlin
go back to reference Jirotka M, Procter R, Hartswood M, Slack R, Simpson A, Coopmans C, Hinds C, Voss A (2005) Collaboration and trust in healthcare innovation: The eDiaMoND case study. Comput Support Coop Work (CSCW) 14(4):369–398CrossRef Jirotka M, Procter R, Hartswood M, Slack R, Simpson A, Coopmans C, Hinds C, Voss A (2005) Collaboration and trust in healthcare innovation: The eDiaMoND case study. Comput Support Coop Work (CSCW) 14(4):369–398CrossRef
go back to reference Johnston M (2006) Good governance: rule of law, transparency, and accountability. United Nations Public Administration Network, New York, pp 1–32 Johnston M (2006) Good governance: rule of law, transparency, and accountability. United Nations Public Administration Network, New York, pp 1–32
go back to reference Joshi A (2017) Legal empowerment and social accountability: Complementary strategies toward rights-based development in health? World Dev 99:160–172CrossRef Joshi A (2017) Legal empowerment and social accountability: Complementary strategies toward rights-based development in health? World Dev 99:160–172CrossRef
go back to reference Kalra D, Stroetmann V, Sundgren M, Dupont D, Schlünder I, Thienpont G, Coorevits P, De Moor G (2017) The European institute for innovation through health data. Learn Health Syst 1(1):1–8 Kalra D, Stroetmann V, Sundgren M, Dupont D, Schlünder I, Thienpont G, Coorevits P, De Moor G (2017) The European institute for innovation through health data. Learn Health Syst 1(1):1–8
go back to reference Kaye J, Hawkins N (2014) Data sharing policy design for consortia: challenges for sustainability. Genome Med 6(1):1–8CrossRef Kaye J, Hawkins N (2014) Data sharing policy design for consortia: challenges for sustainability. Genome Med 6(1):1–8CrossRef
go back to reference Kruse CS, Smith B, Vanderlinden H, Nealand A (2017) Security techniques for the electronic health records. J Med Syst 41(8):1–9CrossRef Kruse CS, Smith B, Vanderlinden H, Nealand A (2017) Security techniques for the electronic health records. J Med Syst 41(8):1–9CrossRef
go back to reference Lehoux P, Williams-Jones B, Miller F, Urbach D, Tailliez S (2008) What leads to better health care innovation? Arguments for an integrated policy-oriented research agenda. J Health Serv Res Policy 13(4):251–254CrossRef Lehoux P, Williams-Jones B, Miller F, Urbach D, Tailliez S (2008) What leads to better health care innovation? Arguments for an integrated policy-oriented research agenda. J Health Serv Res Policy 13(4):251–254CrossRef
go back to reference Macq H, Tancoigne É, Strasser BJ (2020) From deliberation to production: public participation in science and technology policies of the European Commission (1998–2019). Minerva 58(4):489–512CrossRef Macq H, Tancoigne É, Strasser BJ (2020) From deliberation to production: public participation in science and technology policies of the European Commission (1998–2019). Minerva 58(4):489–512CrossRef
go back to reference Malin BA, Emam KE, O’Keefe CM (2013) Biomedical data privacy: problems, perspectives, and recent advances. J Am Med Inform Assoc 20(1):2–6CrossRef Malin BA, Emam KE, O’Keefe CM (2013) Biomedical data privacy: problems, perspectives, and recent advances. J Am Med Inform Assoc 20(1):2–6CrossRef
go back to reference Miller RH, Sim I (2004) Physicians’ use of electronic medical records: barriers and solutions. Health Aff 23(2):116–126CrossRef Miller RH, Sim I (2004) Physicians’ use of electronic medical records: barriers and solutions. Health Aff 23(2):116–126CrossRef
go back to reference Murray CJ, Abbafati C, Abbas KM, Abbasi M, Abbasi-Kangevari M, Abd-Allah F, Abdollahi M, Abedi P, Abedi A, Abolhassani H, Aboyans V (2020) Five insights from the global burden of disease study 2019. Lancet 396(10258):1135–1159CrossRef Murray CJ, Abbafati C, Abbas KM, Abbasi M, Abbasi-Kangevari M, Abd-Allah F, Abdollahi M, Abedi P, Abedi A, Abolhassani H, Aboyans V (2020) Five insights from the global burden of disease study 2019. Lancet 396(10258):1135–1159CrossRef
go back to reference NEJM Catalyst (2018) Healthcare big data and the promise of value-based care. NEJM Catalyst 4(1) NEJM Catalyst (2018) Healthcare big data and the promise of value-based care. NEJM Catalyst 4(1)
go back to reference Novitzky P, Bernstein MJ, Blok V, Braun R, Chan TT, Lamers W, Loeber A, Meijer I, Lindner R, Griessler E (2020) Improve alignment of research policy and societal values. Science 369(6499):39–41CrossRef Novitzky P, Bernstein MJ, Blok V, Braun R, Chan TT, Lamers W, Loeber A, Meijer I, Lindner R, Griessler E (2020) Improve alignment of research policy and societal values. Science 369(6499):39–41CrossRef
go back to reference Owen R, von Schomberg R, Macnaghten P (2021) An unfinished journey? Reflections on a decade of responsible research and innovation. J Responsible Innov 8(2):217–233CrossRef Owen R, von Schomberg R, Macnaghten P (2021) An unfinished journey? Reflections on a decade of responsible research and innovation. J Responsible Innov 8(2):217–233CrossRef
go back to reference Owen R, Pansera M (2019) Responsible innovation and responsible research and innovation. Handbook on science and public policy. pp 26–48 Owen R, Pansera M (2019) Responsible innovation and responsible research and innovation. Handbook on science and public policy. pp 26–48
go back to reference Park E, Kim KJ (2014) An integrated adoption model of mobile cloud services: exploration of key determinants and extension of technology acceptance model. Telemat Inform 31(3):376–385CrossRef Park E, Kim KJ (2014) An integrated adoption model of mobile cloud services: exploration of key determinants and extension of technology acceptance model. Telemat Inform 31(3):376–385CrossRef
go back to reference Pisani E, AbouZahr C (2010) Sharing health data: good intentions are not enough. Bull World Health Organ 88(6):462–466CrossRef Pisani E, AbouZahr C (2010) Sharing health data: good intentions are not enough. Bull World Health Organ 88(6):462–466CrossRef
go back to reference Piwek L, Ellis DA, Andrews S, Joinson A (2016) The rise of consumer health wearables: promises and barriers. PLoS Med 13(2):1–9CrossRef Piwek L, Ellis DA, Andrews S, Joinson A (2016) The rise of consumer health wearables: promises and barriers. PLoS Med 13(2):1–9CrossRef
go back to reference Proksch D, Busch-Casler J, Haberstroh MM, Pinkwart A (2019) National health innovation systems: clustering the OECD countries by innovative output in healthcare using a multi indicator approach. Res Policy 48(1):169–179CrossRef Proksch D, Busch-Casler J, Haberstroh MM, Pinkwart A (2019) National health innovation systems: clustering the OECD countries by innovative output in healthcare using a multi indicator approach. Res Policy 48(1):169–179CrossRef
go back to reference Ribeiro B, Bengtsson L, Benneworth P, Bührer S, Castro-Martínez E, Hansen M, Jarmai K, Lindner R, Olmos-Peñuela J, Ott C, Shapira P (2018) Introducing the dilemma of societal alignment for inclusive and responsible research and innovation. J Responsible Innov 5(3):316–331CrossRef Ribeiro B, Bengtsson L, Benneworth P, Bührer S, Castro-Martínez E, Hansen M, Jarmai K, Lindner R, Olmos-Peñuela J, Ott C, Shapira P (2018) Introducing the dilemma of societal alignment for inclusive and responsible research and innovation. J Responsible Innov 5(3):316–331CrossRef
go back to reference Roberts JP, Fisher TR, Trowbridge MJ, Bent C (2016) A design thinking framework for healthcare management and innovation. Healthcare 4(1):11–14CrossRef Roberts JP, Fisher TR, Trowbridge MJ, Bent C (2016) A design thinking framework for healthcare management and innovation. Healthcare 4(1):11–14CrossRef
go back to reference Saura JR, Ribeiro-Soriano D, Palacios-Marqués D (2021) From user-generated data to data-driven innovation: a research agenda to understand user privacy in digital markets. Int J Inf Manage 60:1–13CrossRef Saura JR, Ribeiro-Soriano D, Palacios-Marqués D (2021) From user-generated data to data-driven innovation: a research agenda to understand user privacy in digital markets. Int J Inf Manage 60:1–13CrossRef
go back to reference Seh AH, Zarour M, Alenezi M, Sarkar AK, Agrawal A, Kumar R, Ahmad Khan R (2020) Healthcare data breaches: insights and implications. Healthcare 8(2):133CrossRef Seh AH, Zarour M, Alenezi M, Sarkar AK, Agrawal A, Kumar R, Ahmad Khan R (2020) Healthcare data breaches: insights and implications. Healthcare 8(2):133CrossRef
go back to reference Shay LA, Lafata JE (2015) Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Making 35(1):114–131CrossRef Shay LA, Lafata JE (2015) Where is the evidence? A systematic review of shared decision making and patient outcomes. Med Decis Making 35(1):114–131CrossRef
go back to reference Smallman, M., (2018) Citizen science and responsible research and innovation. UCL Press, pp. 241–253. Smallman, M., (2018) Citizen science and responsible research and innovation. UCL Press, pp. 241–253.
go back to reference Stilgoe J, Owen R, Macnaghten P (2013) Developing a framework for responsible innovation. Res Policy 42(9):1568–1580CrossRef Stilgoe J, Owen R, Macnaghten P (2013) Developing a framework for responsible innovation. Res Policy 42(9):1568–1580CrossRef
go back to reference Stockdale J, Cassell J, Ford E (2018) “Giving something back”: a systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Res 3(6):1–25 Stockdale J, Cassell J, Ford E (2018) “Giving something back”: a systematic review and ethical enquiry into public views on the use of patient data for research in the United Kingdom and the Republic of Ireland. Wellcome Open Res 3(6):1–25
go back to reference Strasser B, Baudry J, Mahr D, Sanchez G, Tancoigne E (2019) “Citizen science”? Rethinking science and public participation. Sci Technol Stud 32:52–76 Strasser B, Baudry J, Mahr D, Sanchez G, Tancoigne E (2019) “Citizen science”? Rethinking science and public participation. Sci Technol Stud 32:52–76
go back to reference Thakur R, Hsu SH, Fontenot G (2012) Innovation in healthcare: Issues and future trends. J Bus Res 65(4):562–569CrossRef Thakur R, Hsu SH, Fontenot G (2012) Innovation in healthcare: Issues and future trends. J Bus Res 65(4):562–569CrossRef
go back to reference Van Oudheusden M (2014) Where are the politics in responsible innovation? European governance, technology assessments, and beyond. J Responsible Innov 1(1):67–86CrossRef Van Oudheusden M (2014) Where are the politics in responsible innovation? European governance, technology assessments, and beyond. J Responsible Innov 1(1):67–86CrossRef
go back to reference Van Panhuis WG, Paul P, Emerson C, Grefenstette J, Wilder R, Herbst AJ, Heymann D, Burke DS (2014) A systematic review of barriers to data sharing in public health. BMC Public Health 14(1):1–9 Van Panhuis WG, Paul P, Emerson C, Grefenstette J, Wilder R, Herbst AJ, Heymann D, Burke DS (2014) A systematic review of barriers to data sharing in public health. BMC Public Health 14(1):1–9
go back to reference Visschers VH, Siegrist M (2008) Exploring the triangular relationship between trust, affect, and risk perception: a review of the literature. Risk Manag 10(3):156–167CrossRef Visschers VH, Siegrist M (2008) Exploring the triangular relationship between trust, affect, and risk perception: a review of the literature. Risk Manag 10(3):156–167CrossRef
go back to reference Von Schomberg R (2013) A vision of responsible research and innovation. In: Owen R, Bessant J, Heintz M (eds) Responsible innovation: managing the responsible emergence of science and innovation in society. Wiley, London, pp 51–74CrossRef Von Schomberg R (2013) A vision of responsible research and innovation. In: Owen R, Bessant J, Heintz M (eds) Responsible innovation: managing the responsible emergence of science and innovation in society. Wiley, London, pp 51–74CrossRef
go back to reference Von Schomberg L, Blok V (2021) Technology in the age of innovation: responsible innovation as a new subdomain within the philosophy of technology. Philos Technol 34:309–323CrossRef Von Schomberg L, Blok V (2021) Technology in the age of innovation: responsible innovation as a new subdomain within the philosophy of technology. Philos Technol 34:309–323CrossRef
go back to reference Vos T, Lim SS, Abbafati C, Abbas KM, Abbasi M, Abbasifard M, Abbasi-Kangevari M, Abbastabar H, Abd-Allah F, Abdelalim A, Abdollahi M (2020) Global burden of 369 diseases and injuries in 204 countries and territories, 1990–2019: a systematic analysis for the global burden of disease study 2019. Lancet 396(10258):1204–1222CrossRef Vos T, Lim SS, Abbafati C, Abbas KM, Abbasi M, Abbasifard M, Abbasi-Kangevari M, Abbastabar H, Abd-Allah F, Abdelalim A, Abdollahi M (2020) Global burden of 369 diseases and injuries in 204 countries and territories, 1990–2019: a systematic analysis for the global burden of disease study 2019. Lancet 396(10258):1204–1222CrossRef
go back to reference World Health Organization (2020a) Challenges to tackling antimicrobial resistance economic and policy responses: economic and policy responses. OECD Publishing World Health Organization (2020a) Challenges to tackling antimicrobial resistance economic and policy responses: economic and policy responses. OECD Publishing
go back to reference Yu H (2016) Redefining responsible research and innovation for the advancement of biobanking and biomedical research. J Law Biosci 3(3):611–635CrossRef Yu H (2016) Redefining responsible research and innovation for the advancement of biobanking and biomedical research. J Law Biosci 3(3):611–635CrossRef
go back to reference Zwart H, Landeweerd L, van Rooij A (2014) Adapt or perish? Assessing the recent shift in the European research funding arena from ‘ELSA’ to ‘RRI.’ Life Sci Soc Policy 10(1):11CrossRef Zwart H, Landeweerd L, van Rooij A (2014) Adapt or perish? Assessing the recent shift in the European research funding arena from ‘ELSA’ to ‘RRI.’ Life Sci Soc Policy 10(1):11CrossRef
Metadata
Title
Operationalizing the Use of Existing Data in Support of Biomedical Research and Innovation: An Inclusive and Sustainable Approach
Author
Helen Yu
Copyright Year
2024
Publisher
Springer Nature Singapore
DOI
https://doi.org/10.1007/978-981-99-6540-3_5