Confidentiality considerations for use of social-spatial data on the social determinants of health: Sexual and reproductive health case study

Social Science and Medicine

Volumn 166, Issue , 2016, Pages 49-56

  Haley, Danielle F ^a   Matthews, Stephen A ^b   Cooper, Hannah L F ^a   Haardörfer, Regine ^a   Adimora, Adaora A ^c   Wingood, Gina M ^d   Kramer, Michael R ^a  

^a EMORY UNIVERSITY   (United States)

^b PENNSYLVANIA STATE UNIVERSITY   (United States)

^c IL   (United States)

^d University of North Carolina at Chapel Hill ^*  (United States)

Author keywords

Confidentiality; Maps; Quasi identifiers; Sexual health; Social spatial data

Indexed keywords

MAP; PUBLIC HEALTH; REPRODUCTIVE HEALTH; SEXUAL BEHAVIOR; SPATIAL DATA;

ANONYMISED DATA; ANONYMIZATION; ARTICLE; AWARENESS; CASE STUDY; CONFIDENTIALITY; HUMAN; IDENTIFIABLE INFORMATION; INFORMATION DISSEMINATION; PEER REVIEW; PRACTICE GUIDELINE; REPRODUCTIVE HEALTH; SEXUAL HEALTH; SOCIAL DETERMINANTS OF HEALTH; SOCIAL SPATIAL DATA; ETHICS; GEOGRAPHIC MAPPING; REPRODUCTIVE BEHAVIOR; SEXUAL BEHAVIOR; SOCIAL CLASS; STATISTICS AND NUMERICAL DATA;

CONFIDENTIALITY; DATA ANONYMIZATION; GEOGRAPHIC MAPPING; HUMANS; REPRODUCTIVE BEHAVIOR; SEXUAL BEHAVIOR; SOCIAL CLASS; SOCIAL DETERMINANTS OF HEALTH;

EID: 84982113728     PISSN: 02779536     EISSN: 18735347     Source Type: Journal    
DOI: 10.1016/j.socscimed.2016.08.009     Document Type: Article

References (60)

1. Ahearn, S., Icke, I., Datta, R., DeMers, M., Plewe, B., Skupin, A., Re-engineering the GIS&T body of knowledge. Int. J. Geogr. Inf. Sci. 27 (2013), 2227–2245.
2. Allshouse, W.B., Fitch, M.K., Hampton, K.H., Gesink, D.C., Doherty, I.A., Leone, P.A., et al. Geomasking sensitive health data and privacy protection: an evaluation using an E911 database. Geocarto Int. 25 (2010), 443–452.
3. Arksey, H., O'Malley, L., Scoping studies: towards a methodological framework. Int. J. Soc. Res. Methodol. 8 (2005), 19–32.
4. Armstrong, M.P., Rushton, G., Zimmerman, D.L., Geographically masking health data to preserve confidentiality. Stat. Med. 18 (1999), 497–525.
5. Bader, M.D., Mooney, S.J., Rundle, A.G., Protecting personally identifiable information when using online geographic tools for public health research. Am. J. Public Health 106 (2016), 206–208.
6. Boulos, M.N., Curtis, A.J., Abdelmalik, P., Musings on privacy issues in health research involving disaggregate geographic data about individuals. Int. J. Health Geogr., 8, 2009, 46.
7. Brownstein, J.S., Cassa, C.A., Kohane, I.S., Mandl, K.D., An unsupervised classification method for inferring original case locations from low-resolution disease maps. Int. J. Health Geogr., 5, 2006, 56.
8. Brownstein, J.S., Cassa, C.A., Mandl, K.D., No place to hide–reverse identification of patients from published maps. N. Engl. J. Med. 355 (2006), 1741–1742.
9. Campbell, M.K., Piaggio, G., Elbourne, D.R., Altman, D.G., Group, C., Consort 2010 statement: extension to cluster randomised trials. BMJ, 345, 2012, e5661.
10. Cassa, C.A., Wieland, S.C., Mandl, K.D., Re-identification of home addresses from spatial locations anonymized by Gaussian skew. Int. J. Health Geogr., 7, 2008, 45.
11. Chamie, G., Wandera, B., Marquez, C., Kato-Maeda, M., Kamya, M.R., Havlir, D.V., et al. Identifying locations of recent TB transmission in rural Uganda: a multidisciplinary approach. Trop. Med. Int. Health 20 (2015), 537–545.
12. Chang, A.Y., Parrales, M.E., Jimenez, J., Sobieszczyk, M.E., Hammer, S.M., Copenhaver, D.J., et al. Combining Google Earth and GIS mapping technologies in a dengue surveillance system for developing countries. Int. J. Health Geogr., 8, 2009, 49.
13. Collaborative Institutional Training Initiative. Mission and History.
14. Cooper, H.L., Linton, S., Haley, D.F., Kelley, M.E., Dauria, E.F., Karnes, C.C., et al. Changes in exposure to neighborhood characteristics are associated with sexual network characteristics in a cohort of adults relocating from public housing. AIDS Behav. 19:6 (2015), 1016–1030.
15. Curtis, A., Mills, J.W., Agustin, L., Cockburn, M., Confidentiality risks in fine scale aggregations of health data. Comput. Environ. Urban Syst., 35, 2011, 8.
16. Curtis, A.J., Mills, J.W., Leitner, M., Spatial confidentiality and GIS: re-engineering mortality locations from published maps about Hurricane Katrina. Int. J. Health Geogr., 5, 2006, 44.
17. Des Jarlais, D.C., Lyles, C., Crepaz, N., Group, T., Improving the reporting quality of nonrandomized evaluations of behavioral and public health interventions: the TREND statement. J. Inf., 94, 2004.
18. DiBiase, D., DeMers, M., Johnson, A., Kemp, K., Luck, A., Plewe, B., et al. Introducing the first edition of geographic information science and technology body of knowledge. Cartogr. Geogr. Inf. Sci. 34 (2007), 113–120.
19. Diez-Roux, A.V., Multilevel analysis in public health research. Annu. Rev. Public Health 21 (2000), 171–192.
20. Duncan, D.T., Regan, S.D., Shelley, D., Day, K., Ruff, R.R., Al-Bayan, M., et al. Application of global positioning system methods for the study of obesity and hypertension risk among low-income housing residents in New York City: a spatial feasibility study. Geospat Health 9 (2014), 57–70.
21. El Emam, K., Brown, A., AbdelMalik, P., Neisa, A., Walker, M., Bottomley, J., et al. A method for managing re-identification risk from small geographic areas in Canada. BMC Med. Inf. Decis. Mak., 10, 2010, 18.
22. El Emam, K., Jonker, E., Arbuckle, L., Malin, B., A systematic review of re-identification attacks on health data. PLoS One, 6, 2011, e28071.
23. El Emam, K., Jonker, E., Arbuckle, L., Malin, B., Correction: a systematic review of re-identification attacks on health data. PLoS One, 10, 2015, e0126772.
24. El Emam, K., Rodgers, S., Malin, B., Anonymising and sharing individual patient data. BMJ, 350, 2015, h1139.
25. Gutmann, M., Witkowski, K., Colyer, C., O'Rourke, J.M., McNally, J., Providing spatial data for secondary analysis: issues and current practices relating to confidentiality. Popul. Res. Policy Rev. 27 (2008), 639–665.
26. Hampton, K.H., Fitch, M.K., Allshouse, W.B., Doherty, I.A., Gesink, D.C., Leone, P.A., et al. Mapping health data: improved privacy protection with donut method geomasking. Am. J. Epidemiol. 172 (2010), 1062–1069.
27. Kounadi, O., Lampoltshammer, T.J., Leitner, M., Heistracher, T., Accuracy and privacy aspects in free online reverse geocoding services. Cartogr. Geogr. Inf. Sci. 40 (2013), 140–153.
28. Kounadi, O., Leitner, M., Why does geoprivacy matter? the scientific publication of confidential data presented on maps. J. Empir. Res. Hum. Res. Ethics 9 (2014), 34–45.
29. Kounadi, O., Leitner, M., Defining a threshold value for maximum spatial information loss of masked geo-data. ISPRS Int. J. Geo-Information 4 (2015), 572–590.
30. Krieger, N., Chen, J.T., Waterman, P.D., Rehkopf, D.H., Subramanian, S.V., Race/ethnicity, gender, and monitoring socioeconomic gradients in health: a comparison of area-based socioeconomic measures–the public health disparities geocoding project. Am. J. Public Health 93 (2003), 1655–1671.
31. Krieger, N., Waterman, P., Chen, J.T., Soobader, M.J., Subramanian, S.V., Carson, R., Zip code caveat: bias due to spatiotemporal mismatches between zip codes and US census-defined geographic areas–the Public Health Disparities Geocoding Project. Am. J. Public Health 92 (2002), 1100–1102.
32. Krieger, N., Waterman, P.D., Chen, J.T., Soobader, M.J., Subramanian, S.V., Monitoring socioeconomic inequalities in sexually transmitted infections, tuberculosis, and violence: geocoding and choice of area-based socioeconomic measures–the public health disparities geocoding project (US). Public Health Rep. 118 (2003), 240–260.
33. Krumm, J., Inference Attacks on Location Tracks. Pervasive 2007. 2007, Toronto, Ontario, Canada.
34. Law, D.C., Serre, M.L., Christakos, G., Leone, P.A., Miller, W.C., Spatial analysis and mapping of sexually transmitted diseases to optimise intervention and prevention strategies. Sex. Transm. Infect. 80 (2004), 294–299.
35. Levac, D., Colquhoun, H., O'Brien, K.K., Scoping studies: advancing the methodology. Implement Sci., 5, 2010, 69.
36. Littell, J.H., Corcoran, J., Pillai, V.K., Systematic Reviews and Meta-analysis. 2008, Oxford University Press, Oxford; New York.
37. Lorway, R., Khan, S., Reassembling epidemiology: mapping, monitoring and making-up people in the context of HIV prevention in India. Soc. Sci. Med. 112 (2014), 51–62.
38. Lovett, R., Fisher, J., Al-Yaman, F., Dance, P., Vally, H., A review of Australian health privacy regulation regarding the use and disclosure of identified data to conduct data linkage. Aust. N. Z. J. Public Health 32 (2008), 282–285.
39. Lozano-Fuentes, S., Elizondo-Quiroga, D., Farfan-Ale, J.A., Loroño-Pino, M.A., Garcia-Rejon, J., Gomez-Carro, S., et al. Use of Google Earth to strengthen public health capacity and facilitate management of vector-borne diseases in resource-poor environments. Bull. World Health Organ 86 (2008), 718–725.
40. Margolis, R., Derr, L., Dunn, M., Huerta, M., Larkin, J., Sheehan, J., et al. The National Institutes of Health's Big Data to Knowledge (BD2K) initiative: capitalizing on biomedical big data. J. Am. Med. Inf. Assoc. 21 (2014), 957–958.
41. Nass, S.J., Levit, L.A., Gostin, L.O., Institute of Medicine (U.S.). Committee on Health Research and the Privacy of Health Information the HIPAA Privacy Rule. Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health through Research. 2009, National Academies Press, Washington, D.C.
42. National Cancer Institute, Conference on Geospatial Approaches to Cancer Control and Population Sciences, 2016, Natcher Conference Center, NIH Campus, Bethesda, MD http://epi.grants.cancer.gov/events/geospatial/.
43. National Research Council (U.S.), Panel on Confidentiality Issues Arising from the Integration of Remotely Sensed and Self-Identifying Data. Putting People on the Map: Protecting Confidentiality with Linked Social-spatial Data. 2007, National Academies Press, Washington, DC.
44. Oakes, J.M., Kaufman, J.S., Methods in Social Epidemiology. 2006, Jossey-Bass, San Francisco, CA.
45. Office of Clinical Research, Guidance Regarding Methods for De-identification of Protected Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule. 2012, United States Department of Health and Human Services.
46. Paiva, T., Chakraborty, A., Reiter, J., Gelfand, A., Imputation of confidential data sets with spatial locations using disease mapping models. Stat. Med. 33 (2014), 1928–1945.
47. Palmer, J.R., Espenshade, T.J., Bartumeus, F., Chung, C.Y., Ozgencil, N.E., Li, K., New approaches to human mobility: using mobile phones for demographic research. Demography 50 (2013), 1105–1128.
48. Plint, A.C., Moher, D., Morrison, A., Schulz, K., Altman, D.G., Hill, C., et al. Does the CONSORT checklist improve the quality of reports of randomised controlled trials? A systematic review. Med. J. Aust. 185 (2006), 263–267.
49. Ruggles, S., Big microdata for population research. Demography 51 (2014), 287–297.
50. Seidl, D., Paulus, G., Jankowski, P., Regenfelder, M., Spatial obfuscation methods for privacy protection of household-level data. Appl. Geogr. 63 (2015), 253–263.
51. Snow, J., On the Mode of Communication of Cholera. 1855, J. Churchill, London,.
52. Sweeney, L., Simple Demographics Often Identify People Uniquely. Data Privacy Working Paper 3. 2000, Carnegie Mellon University, Pittsburgh, Pennsylvania.
53. Sweeney, L., k-anonymity: a model for protecting privacy. Int. J. Uncertain. Fuzziness Knowledge-Based Syst. 10 (2002), 557–570.
54. Turner, L., Shamseer, L., Altman, D.G., Schulz, K.F., Moher, D., Does use of the CONSORT Statement impact the completeness of reporting of randomised controlled trials published in medical journals? A Cochrane review. Syst. Rev., 1, 2012, 60.
55. VanWey, L.K., Rindfuss, R.R., Gutmann, M.P., Entwisle, B., Balk, D.L., Confidentiality and spatially explicit data: concerns and challenges. Proc. Natl. Acad. Sci. U. S. A. 102 (2005), 15337–15342.
56. Wang, H., Reiter, J.P., Multiple imputation for sharing precise geographies in public use data. Ann. Appl. Stat. 6 (2012), 229–252.
57. Wartenberg, D., Thompson, W.D., Privacy versus public health: the impact of current confidentiality rules. Am. J. Public Health 100 (2010), 407–412.
58. Wieland, S.C., Cassa, C.A., Mandl, K.D., Berger, B., Revealing the spatial distribution of a disease while preserving privacy. Proc. Natl. Acad. Sci. U. S. A. 105 (2008), 17608–17613.
59. Yarmohammadian, M.H., Raeisi, A.R., Tavakoli, N., Nansa, L.G., Medical record information disclosure laws and policies among selected countries; a comparative study. J. Res. Med. Sci. 15 (2010), 140–149.
60. Zandbergen, P., Ensuring confidentiality of geocoded health data: assessing geographic masking strategies for individual-level data. Adv. Med., 2014, 2014, 14.