From patients to partners: participant-centric initiatives in biomedical research (original) (raw)

Nature Reviews Genetics volume 13, pages 371–376 (2012) Cite this article

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Abstract

Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs.

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References

  1. Mascalzoni, D. et al. Consenting in population genomics as an open communication process. Stud. Ethics Law Tech. 3, 2 (2009).
    Article Google Scholar
  2. McGuire, A., Caulfield, T. & Cho, M. Research ethics and the challenge of whole-genome sequencing. Nature Rev. Genet. 9, 152–156 (2008).
    Article CAS Google Scholar
  3. Wagstaff, A. International biobanking regulations: the promise and the pitfalls. Cancer World 42, 23–29 (2011).
    Google Scholar
  4. Schulte in den Bäumen, T., Paci, D. & Ibarreta, D. Data protection and sample management in biobanking—a legal dichotomy. Genomics Soc. Policy 6, 33–46 (2010).
    Article Google Scholar
  5. Kaye, J. From single biobanks to international networks: developing e-governance. Hum. Genet. 130, 377–382 (2011).
    Article CAS Google Scholar
  6. Heeney, C., Hawkins, N., de Vries J., Boddington P. & Kaye, J. Assessing the privacy risks of data sharing in genomics. Pub. Health Gen. 14, 17–25 (2010).
    Article Google Scholar
  7. Kaye, J. The tension between data sharing and the protection of privacy in genomics research. Annu. Rev. Genomics Hum. Genet. 9 Mar 2012 (doi:10.1146/annurev-genom-082410-101454).
    Article CAS Google Scholar
  8. Brown, I., Brown, L. & Korff, D. Using patient data for research without consent. Law Inn. Tech. 2, 219–258 (2010).
    Article Google Scholar
  9. Trinidad, S. B. et al. Genomic research and wide data sharing: views of prospective participants. Genet. Med. 12, 486–495 (2010).
    Article Google Scholar
  10. Shelton, R. H. Electronic consent channels: preserving patient privacy without handcuffing researchers. Sci. Transl. Med. 3, 69cm4 (2011).
    Article Google Scholar
  11. Terry, S. F. & Terry, P. F. Power to the people: participant ownership of clinical trial data. Sci. Transl. Med. 3, 69cm3 (2011).
    Article Google Scholar
  12. Bourgeois, F. C., Taylor, P. L., Emans, S. J., Nigrin, D. J. & Mandl, K. D. Whose personal control? Creating private, personally controlled health records for pediatric and adolescent patients. J. Am. Med. Inform. Assoc. 15, 737–743 (2008).
    Article Google Scholar
  13. Feied, C. F. et al. Clinical information systems: instant ubiquitous clinical data for error reduction and improved clinical outcomes. Acad. Emerg. Med. 11, 1162–1169 (2004).
    Article Google Scholar
  14. Porter, S. C., Forbes, P., Manzi, S. & Kalish, L. Patients providing the answers: narrowing the gap in data quality for emergency care. Qual. Saf. Health Care 19, 1–5 (2010).
    Article Google Scholar
  15. Mahoney, C. D., Berard-Collins, C. M., Coleman, R., Amaral, J. F. & Cotter, C. M. Effects of an integrated clinical information system on medication safety in a multi-hospital setting. Am. J. Health Syst. Pharm. 64, 1969–1977 (2007).
    Article Google Scholar
  16. Baker, L. C. Benefits of interoperability: a closer look at the estimates. Health Aff. 19 Jan 2005 (doi: 10.1377/hlthaff.w5.22).
    Article Google Scholar
  17. Walker, J. et al. The value of health care information exchange and interoperability. Health Aff. 19 Jan 2005 (doi:10.1377/hlthaff.w5.10).
    Article Google Scholar
  18. Hook, J. M., Pan, E., Adler-Milstein, J., Bu, D. & Walker, J. The value of healthcare information exchange and interoperability in New York state. AMIA Annu. Symp. Proc. 2006, 953 (2006).
    PubMed Central Google Scholar
  19. Teich, J. M. The benefits of sharing clinical information. Ann. Emerg. Med. 31, 274–276 (1998).
    Article CAS Google Scholar
  20. Wicks, P., Vaughan, T. E., Massagli, M. P. & Heywood, J. Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nature Biotech. 29, 411–414 (2011).
    Article CAS Google Scholar
  21. Do, C. B. et al. Web-based genome-wide association study identifies two novel loci and a substantial genetic component for Parkinson's disease. PLoS Genet. 7, e1002141 (2011).
    Article CAS Google Scholar
  22. Cross, M. BMA warns against letting patients have access to their electronic records. BMJ 342, 206 (2011).
    Article Google Scholar
  23. Al-Ubaydli, M. A. & Smith, R. The BMA has adopted an old fashioned, paternalistic, and misguided policy by warning against patients having access to their electronic records. BMJ Rapid Response [online], (2011).
    Google Scholar
  24. TheAcademy of Medical Sciences. Personal data for public good: using health information in medical research. The Academy of Medical Sciences [online], (2006).
  25. Wellcome Trust. Public attitudes to research governance: a qualitative study in a deliberative context. Wellcome Trust [online], (2007).
  26. Medical Research Council. The use of personal health information in medical research. Medical Research Council [online], (2007).
  27. Khong, S.-Y., Currie, I. & Eccles, S. NHS Connecting for Health and the National Programme for Information Technology. Obstetrician Gynaecol. 10, 27–32 (2008).
    Article Google Scholar
  28. The Royal Academy of Engineering. Privacy and prejudice: young people's views on the development and use of electronic patient records. The Royal Academy of Engineering [online], (2010).
  29. Eriksson, N. et al. Web-based, participant-driven studies yield novel genetic associations for common traits. PLoS Genet. 6, e1000993 (2010).
    Article Google Scholar

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Acknowledgements

J.K. would like to thank the Wellcome Trust (096599/2/11/Z). J.K., L.C., N.K. and D.L. thank EnCoRe (TSB/ESPRC/ESRC EP/G002541/1). K.E., S.M.F. and N.A. thank the UW Institute of Translational Health Sciences (NCRR/NCATS, UL1 RR025014). J.S. thanks the UK National Institute for Health Research Biomedical Research Centre in Oxford, UK. S.F.T. thanks the Health Resources and Services Administration at the US Department of Health and Human Services (U33MC07945-04).

Author information

Authors and Affiliations

  1. Department of Public Health, Jane Kaye and Nadja Kanellopoulou are at HeLEX, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK.,
    Jane Kaye & Nadja Kanellopoulou
  2. Liam Curren is in Research Services at the University of Oxford, 9 Parkes Road, Oxford OX1 3ED, UK.,
    Liam Curren
  3. Nick Anderson is at the Department of Biomedical Informatics and Medical Education, University of Washington, Seattle, Washington 98195, USA.,
    Nick Anderson
  4. Kelly Edwards and Stephanie M. Fullerton are at the Department of Bioethics and Humanities, University of Washington School of Medicine, BOX 357120, Seattle, Washington 98195, USA.,
    Kelly Edwards & Stephanie M. Fullerton
  5. David Lund is at HW Communications Ltd, Parkfield, Greaves Road, Lancaster LA1 4TZ, UK.,
    David Lund
  6. Daniel G. MacArthur is at the Analytic and Translational Genetics Unit, Massachusetts General Hospital, Boston, Massachusetts 02114, USA.,
    Daniel G. MacArthur
  7. Deborah Mascalzoni is at the Institute of Genetic Medicine, EURAC Research, Viale Druso 1, I-39100 Bolzano, Italy.,
    Deborah Mascalzoni
  8. James Shepherd is at the NIHR Biomedical Research Centre, Joint Research Office, Block 60, Churchill Hospital, Old Road, Headington, Oxford OX3 7LJ, UK.,
    James Shepherd
  9. Patrick L. Taylor was at the Department of Pediatrics, Harvard Medical School, Boston, Massachusetts 02115, USA.,
    Patrick L. Taylor
  10. Sharon F. Terry is at the Genetic Alliance, 4301 Connecticut Avenue NW, Suite 404, Washington, DC 20008, USA.,
    Sharon F. Terry
  11. Stefan F. Winter is at the Centre for Public Health Care, Institute for Epidemiology, Social Medicine and Health Care System Research, Hannover Medical School, Carl-Neuberg-Strasse 1, 30625 Hannover, Germany.,
    Stefan F. Winter

Authors

  1. Jane Kaye
  2. Liam Curren
  3. Nick Anderson
  4. Kelly Edwards
  5. Stephanie M. Fullerton
  6. Nadja Kanellopoulou
  7. David Lund
  8. Daniel G. MacArthur
  9. Deborah Mascalzoni
  10. James Shepherd
  11. Patrick L. Taylor
  12. Sharon F. Terry
  13. Stefan F. Winter

Corresponding author

Correspondence toJane Kaye.

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Competing interests

The authors declare no competing financial interests.

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Kaye, J., Curren, L., Anderson, N. et al. From patients to partners: participant-centric initiatives in biomedical research.Nat Rev Genet 13, 371–376 (2012). https://doi.org/10.1038/nrg3218

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