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From patients to partners: participant-centric initiatives in biomedical research


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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  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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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).

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Correspondence to Jane Kaye.

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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).

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