Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

HEALTH POLICY

If patients are the true north, patient-centeredness should guide research

‘Patient-centered’ research has traditionally meant that researchers and clinicians design trials for the benefit of patients. By contrast, patients today are central to study design and reporting outcomes, and new research agendas recognize that patients can point the way to research questions and how to address them.

Access options

Rent or Buy article

Get time limited or full article access on ReadCube.

from$8.99

All prices are NET prices.

References

  1. 1.

    Schoemaker, C. G. et al. Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol. Pediatr. Rheumatol. Online J. 16, 57 (2018).

    Article  Google Scholar 

  2. 2.

    Partridge, N. & Scadding, J. The James Lind Alliance: patients and clinicians should jointly identify their priorities for clinical trials. Lancet 364, 1923–1924 (2004).

    Article  Google Scholar 

  3. 3.

    Domecq, J. P. et al. Patient engagement in research: a systematic review. BMC Health Serv. Res. 14, 89 (2014).

    Article  Google Scholar 

  4. 4.

    National Institute for Health Research. INVOLVE | INVOLVE Supporting public involvement in NHS, public health and social care research. INVOLVE http://www.invo.org.uk (2018).

  5. 5.

    US Department fo Health and Human Services. Principles of community engagement, second edition. ATSDR https://www.atsdr.cdc.gov/communityengagement/pdf/PCE_Report_508_FINAL.pdf (2018).

  6. 6.

    Selby, J. V. et al. Multistakeholder engagement in PCORnet, the national patient-centered clinical research network. Med. Care 56 (Suppl. 1), S4–S5 (2018).

    Article  Google Scholar 

  7. 7.

    Institute of Medicine. The Learning Healthcare System: Workshop Summary (eds Olsen, L., Aisner, D. & McGinnis, J. M.) (National Academies Press, Washington DC, 2007).

  8. 8.

    Sheridan, S. et al. The PCORI engagement rubric: promising practices for partnering in research. Ann. Fam. Med. 15, 165–170 (2017).

    Article  Google Scholar 

  9. 9.

    Mullins, C. D., Abdulhalim, A. M. & Lavallee, D. C. Continuous patient engagement in comparative effectiveness research. JAMA 307, 1587–1588 (2012).

    CAS  Article  Google Scholar 

Download references

Acknowledgements

The authors acknowledge that the views expressed in this article are informed by their research funded by the Agency for Healthcare Research and Quality (C.D.M.) and Patient-Centered Outcomes Research Institute (C.D.M. and L.E.S.). The views expressed are solely those of the authors and do not necessarily represent the views of the Agency for Healthcare Research and Quality or the Patient-Centered Outcomes Research Institute, its Board of Governors, or Methodology Committee. No statement should be construed as an official position of the Agency for Healthcare Research and Quality or of the U.S. Department of Health and Human Services.

Author information

Affiliations

Authors

Corresponding author

Correspondence to C. Daniel Mullins.

Ethics declarations

Competing interests

C.D.M. and L.E.S. declare that they each received a research contract from the Patient-Centered Outcomes Research Institute.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Schanberg, L.E., Mullins, C.D. If patients are the true north, patient-centeredness should guide research. Nat Rev Rheumatol 15, 5–6 (2019). https://doi.org/10.1038/s41584-018-0129-y

Download citation

Further reading

Search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing