Skip to main content

Predictive Analytics and the Return of “Research” Information to Participants

  • Conference paper
  • First Online:
Advances in the Human Side of Service Engineering (AHFE 2020)

Abstract

The World Health Organization (WHO) estimates older adults aged 60+ will double by 2050 with 80% living in low to moderate income countries. As remote research studies supported by digital devices increase separation between researchers and participants, it is important to maintain participant trust. Research participants have expressed an interest in accessing both group and individual level results, which are not readily available. To bridge this gap, we engaged residents of a local continuing care senior housing community (CCSHC) to co-design documents used to convey information about study results. The process informed the refinement of informational materials for communicating scientific research that the CCSHC community considers accessible and meaningful.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 169.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Similar content being viewed by others

References

  1. United Nations: Ageing. https://www.un.org/en/sections/issues-depth/ageing/

  2. Matthew-Maich, N., Harris, L., Ploeg, J., Markle-Reid, M., Valaitis, R., Ibrahim, S., Gafni, A., Isaacs, S.: Designing, implementing, and evaluating mobile health technologies for managing chronic conditions in older adults: a scoping review. JMIR mHealth and uHealth 4, e29 (2016)

    Article  Google Scholar 

  3. Dunseath, S., Weibel, N., Bloss, C.S., Nebeker, C.: NIH support of mobile, imaging, pervasive sensing, social media and location tracking (MISST) research: laying the foundation to examine research ethics in the digital age. npj Digital Med. 1, 1–6 (2018)

    Google Scholar 

  4. Denny, J.C., Goldstein, D.B., Philippakis, A., Smoller, J.W., Jenkins, G., Dishman, E.: The “All of Us” research program. N. Engl. J. Med. 381, 668–676 (2019)

    Article  Google Scholar 

  5. Khodyakov, D., Mendoza-Graf, A., Berry, S., Nebeker, C., Bromley, E.: Return of value in the new era of biomedical research—one size will not fit all. AJOB Empirical Bioethics 10, 265–275 (2019)

    Article  Google Scholar 

  6. National Academies of Sciences: Engineering, Medicine: Returning Individual Research Results to Participants: Guidance for a New Research Paradigm., Washington, DC (2018)

    Google Scholar 

  7. Wong, C.A., Hernandez, A.F., Califf, R.M.: Return of research results to study participants: uncharted and untested. JAMA 320, 435–436 (2018)

    Article  Google Scholar 

  8. Wang, S., Bolling, K., Mao, W., Reichstadt, J., Jeste, D., Kim, H.-C., Nebeker, C.: Technology to support aging in place: older adults’ perspectives. Healthcare (Basel), 7, 60 (2019)

    Google Scholar 

  9. Jeste, D.V., Glorioso, D., Lee, E.E., Daly, R., Graham, S., Liu, J., Paredes, A.M., Nebeker, C., Tu, X.M., Twamley, E.W., Patten, R.V., Yamada, Y., Depp, C., Kim, H.-C.: Study of independent living residents of a continuing care senior housing community: sociodemographic and clinical associations of cognitive, physical, and mental health. Am. J. Geriatric Psychiatry 27, 895–907 (2019)

    Article  Google Scholar 

  10. Gorny, A.W., Liew, S.J., Tan, C.S., Müller-Riemenschneider, F.: Fitbit charge HR wireless heart rate monitor: validation study conducted under free-living conditions. JMIR Mhealth Uhealth 5, e157 (2017)

    Article  Google Scholar 

  11. de Zambotti, M., Goldstone, A., Claudatos, S., Colrain, I.M., Baker, F.C.: A validation study of Fitbit Charge 2TM compared with polysomnography in adults. Chronobiol. Int. 35, 465–476 (2018)

    Article  Google Scholar 

  12. Fitabase - Research Device Data and Analytics. https://www.fitabase.com/

  13. Bunnik, E.M., van Bodegom, L., Pinxten, W., de Beaufort, I.D., Vernooij, M.W.: Ethical framework for the detection, management and communication of incidental findings in imaging studies, building on an interview study of researchers’ practices and perspectives. BMC Med Ethics. 18, (2017)

    Google Scholar 

  14. Illes, J., Kirschen, M.P., Edwards, E., Stanford, L.R., Bandettini, P., Cho, M.K., Ford, P.J., Glover, G.H., Kulynych, J., Macklin, R., Michael, D.B., Wolf, S.M.: Incidental findings in brain imaging research. Science 311, 783–784 (2006)

    Article  Google Scholar 

  15. McGuire, A.L., Joffe, S., Koenig, B.A., Biesecker, B.B., McCullough, L.B., Blumenthal-Barby, J.S., Caulfield, T., Terry, S.F., Green, R.C.: Ethics and genomic incidental findings. Science 340, 1047–1048 (2013)

    Article  Google Scholar 

  16. Wolf, S.M.: The continuing evolution of ethical standards for genomic sequencing in clinical care: restoring patient choice. J. Law, Med. Ethics 45, 333–340 (2017)

    Article  Google Scholar 

  17. Zawati, M.H., Knoppers, B.M.: International normative perspectives on the return of individual research results and incidental findings in genomic biobanks. Genet Med. 14, 484–489 (2012)

    Article  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Camille Nebeker .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2020 The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature Switzerland AG

About this paper

Check for updates. Verify currency and authenticity via CrossMark

Cite this paper

Wang, S., Lee, E.E., Zywicki, B., Kim, HC., Jeste, D., Nebeker, C. (2020). Predictive Analytics and the Return of “Research” Information to Participants. In: Spohrer, J., Leitner, C. (eds) Advances in the Human Side of Service Engineering. AHFE 2020. Advances in Intelligent Systems and Computing, vol 1208. Springer, Cham. https://doi.org/10.1007/978-3-030-51057-2_20

Download citation

  • DOI: https://doi.org/10.1007/978-3-030-51057-2_20

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-51056-5

  • Online ISBN: 978-3-030-51057-2

  • eBook Packages: EngineeringEngineering (R0)

Publish with us

Policies and ethics