Swipe om te navigeren naar een ander artikel
A cornerstone of patient-centered outcome research is direct patient involvement throughout the research process. Identifying and prioritizing research topics is a critical but often overlooked point for involvement, as it guides what research questions are asked. We assess the feasibility of involving individuals with low back pain in identifying and prioritizing research topics using two approaches: an existing patient registry and an online crowdsourcing platform. We compare and contrast the diversity of participants recruited, their responses, and resources involved.
Eligible participants completed a survey ranking their five highest priority topics from an existing list and supplying additional topics not previously identified. We analyzed their responses using descriptive statistics and content analysis.
The patient registry yielded older (mean age 72.4), mostly White (70%), and well-educated (95% high school diploma or higher) participants; crowdsourcing yielded younger (mean age 36.6 years), mostly White (82%), and well-educated (98% high school diploma or higher) participants. The two approaches resulted in similar research priorities by frequency. Both provided open-ended responses that were useful, in that they illuminate additional and nuanced research topics. Overall, both approaches suggest a preference towards topics related to diagnosis and treatment over other topics.
Using a patient registry and crowdsourcing are both feasible recruitment approaches for engagement. Researchers should consider their approach, community, and resources when choosing their recruitment approach, as each approach has its own strengths and weaknesses. These approaches are likely most appropriate to supplement or to complement in-person and ongoing engagement strategies.
Log in om toegang te krijgen
Met onderstaand(e) abonnement(en) heeft u direct toegang:
Boote, J., Telford, R., & Cooper, C. (2002). Consumer involvement in health research: A review and research agenda. Health Policy (Amsterdam, Netherlands). doi: 10.1016/S0168-8510(01)00214-7.
Crowe, S., Fenton, M., Hall, M., Cowan, K., & Chalmers, I. (2015). Patients’, clinicians’ and the research communities’ priorities for treatment research: There is an important mismatch. Research Involvement and Engagement. doi: 10.1186/s40900-015-0003-x.
Elwyn, G., Crowe, S., Fenton, M., Firkins, L., Versnel, J., Walker, S., Cook, I., Holgate, S., Higgins, B., & Gelder, C. (2010). Identifying and prioritizing uncertainties: Patient and clinician engagement in the identification of research questions. Journal of Evaluation in Clinical Practice. doi: 10.1111/j.1365-2753.2009.01262.x.
Tong, A., Sainsbury, P., Carter, S. M., Hall, B., Harris, D. C., Walker, R. G., Hawley, C. M., Chadban, S., & Craig, J. C. (2008). Patients’ priorities for health research: Focus group study of patients with chronic kidney disease. Nephrology, Dialysis, Transplantation: Official Publication of the European Dialysis and Transplant Association - European Renal Association. doi: 10.1093/ndt/gfn207.
Cowan, K., & Oliver, S. (2012). The James Lind Alliance Guidebook: Version 4. Retrieved from http://www.jlaguidebook.org/.
Faulkner, A. (2010). Changing our worlds: Examples of user-controlled research in action. Eastleigh: INVOLVE
Legare, F., Boivin, A., van der Weijden, T., Pakenham, C., Burgers, J., Legare, J., St-Jacques, S., & Gagnon, S. (2011). Patient and public involvement in clinical practice guidelines: A knowledge synthesis of existing programs. Medical Decision Making: An International Journal of the Society for Medical Decision Making. doi: 10.1177/0272989X11424401.
Boote, J., Baird, W., & Beecroft, C. (2010). Public involvement at the design stage of primary health research: A narrative review of case examples. Health Policy (Amsterdam, Netherlands). doi: 10.1016/j.healthpol.2009.11.007.
Deyo, R. A., Mirza, S. K., & Martin, B.I. (2006). Back pain prevalence and visit rates: Estimates from U.S. national surveys, 2002. Spine (Phila Pa 1976). doi: 10.1097/01.brs.0000244618.06877.cd.
Mallery, C., Ganachari, D., Fernandez, J., Smeeding, L., Robinson, S., Moon, M., Lavallee, D., & Siegel, J. (2012). Innovative methods in stakeholder engagement: An environmental scan, Prepared by the American Institutes for Research under contract no. HHSA 290 2010 0005 C, AHRQ publication no. 12-EHC097-EF, 2012. Retrieved from http://www.effectivehealthcare.ahrq.gov/index.cfm/tools-and-resources/how-to-get-involved-in-the-effective-health-care-program/.
CERTAIN Collaborative. (2016). Back Pain Research Patient Advisory Group, 2016. Retrieved October 13, 2016, from http://www.becertain.org/partner/patient_advisory_network/back_pain.
Jarvik, J. G., Comstock, B. A., Bresnahan, B. W., Nedeljkovic, S. S., Nerenz, D. R., Bauer, Z., Avins, A. L., James, K., Turner, J. A., Heagerty, P., Kessler, L., Friedly, J. L., Sullivan, S. D., & Deyo, R. A. (2012). Study protocol: The back pain outcomes using longitudinal data (BOLD) registry. BMC Musculoskeletal Disorders. doi: 10.1186/1471-2474-13-64.
Amazon.com Inc. (2016). Overview-Amazon Mechanical Turk, 2016. Retrieved October 13, 2016, from https://requester.mturk.com/.
Roland, M., & Morris, R. (1983). A study of the natural history of low-back pain. Part II: Development of guidelines for trials of treatment in primary care. Spine (Phila Pa 1976), 8(2), 145–150. CrossRef
Costa Lda, C., Koes, B. W., Pransky, G., Borkan, J., Maher, C. G., & Smeets, R. J. (2013). Primary care research priorities in low back pain: An update. Spine (Phila Pa 1976). doi: 10.1097/BRS.0b013e318267a92f.
Institute of Translational Health Sciences. (2016). REDCap, 2016. Retrieved from https://www.iths.org/investigators/services/bmi/redcap.
American Heart Association, Patient-Centered Outcomes Research Institute. (2017). PRecision Medicine Advances Using Nationally Crowdsourced Comparative Effectiveness Research (PRANCCER), 2017. Retrieved from https://professional.heart.org/idc/groups/ahamah-public/@wcm/@sop/@rsch/documents/downloadable/ucm_491020.pdf.
Jarvik, J. G., Comstock, B. A., Heagerty, P. J., Turner, J. A., Sullivan, S. D., Shi, X., Nerenz, D. R., Nedeljkovic, S. S., Kessler, L., James, K., Friedly, J. L., Bresnahan, B. W., Bauer, Z., Avins, A. L., & Deyo, R. A. (2014). Back pain in seniors: The Back pain outcomes using longitudinal data (BOLD) cohort baseline data. BMC Musculoskeletal Disorders. doi: 10.1186/1471-2474-15-134.
Connor Huff, D. T. (2015). “Who are these people?” Evaluating the demographic characteristics and political preferences of MTurk survey respondents. Research & Politics, 2(3), 1–12.
Ryan, C. L., & Bauman, K. (2016). Educational attainment in the United States: 2015. Population Characteristics. 2016, 20–578.
Hoy, D., Brooks, P., Blyth, F., & Buchbinder, R. (2010). The epidemiology of low back pain. Best Practice & Research: Clinical Rheumatology. doi: 10.1016/j.berh.2010.10.002.
- Prioritizing research topics: a comparison of crowdsourcing and patient registry
Anjali R. Truitt
Sarah E. Monsell
Andrew L. Avins
David R. Nerenz
Sarah O. Lawrence
Bryan A. Comstock
Todd C. Edwards
Donald L. Patrick
Jeffrey G. Jarvik
Danielle C. Lavallee
- Springer International Publishing