Open Access
Subscription Access
Public led online trials and participatory action research: Why do we need them?
Abstract
Aim: The aim of this paper is to propose a participatory action research network where the public are equipped with the tools to become informed and responsible shared research decision-makers who help prioritize, initiate, design, organize and participate in health research through online randomized controlled trials about health and wellbeing.
Concept Summary: Public involvement in clinical trials tends to focus on patient values and experience rather than increasing research literacy or fostering active collaboration and informed shared decision-making amongst citizens. Although literature searches reveal bespoke platforms and pockets of participant collaboration in online trials there are no known international research initiatives exploring this perspective through participatory action research. The potential and the limitations of pragmatic "Does it Work?" clinical trials for engaging citizen collaborators is discussed in addition to the capacity of public led online clinical trials to increase research literacy and participant satisfaction.
Keywords
References
Price, A.I. (2013). Part-4 PLOT-IT: Public-Led Online Trials-Infrastructure and Tools: Reflections.
Price, A. (2014). BMJ Blogs: The BMJ » Blog Archive » Amy Price: Patients doing research for themselves. BMJ Blogs. http://blogs.bmj.com/bmj/2014/10/17/amy-price-patients-doing-research-for-themselves/ (accessed 8 Dec2014).
Price, A., Biswas, T. & Biswas, R. (2013). Person-centered healthcare in the information age: Experiences from a user driven healthcare network. European Journal for Person Centered Healthcare 1, 385-393.
DeBronkart, D. (2013). Let Patients Help! New Hampshire: Create Space Independent Publishing Platform.
Staley, K. (2015). ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research Involvement and Engagement 1, 6. doi:10.1186/s40900-015-0008-5.
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 1, 2. doi:10.1186/s40900-015-0003-x.
Wen, K-Y., Kreps, G., Zhu, F. & Miller, S. (2010). Consumers’ perceptions about and use of the internet for personal health records and health information exchange: analysis of the 2007 Health Information National Trends Survey. Journal of Medical Internet Research 12 (4) e73.
Thornton, H., Edwards, A. & Elwyn, G. (2003). Evolving the multiple roles of ‘patients’ in health-care research: reflections after involvement in a trial of shared decision-making. Health Expectations 6, 189-197.
Reason, P. & Bradbury, H. (2006). Handbook of action research: the concise paperback edition. London UK: Sage Publications.
Joseph-Williams, N., Elwyn, G. & Edwards, A. (2014). Knowledge is not power for patients: a systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Education and Counseling 94, 291-309.
Evans, I., Thornton, H. & Chalmers, I. (2006). Testing Treatments Better Research for Better Healthcare.
Luckin, R. (2008). The learner centric ecology of resources: A framework for using technology to scaffold learning. Computers & Education 50, 449-462.
Fawcett, L.M. & Garton, A.F. (2005). The effect of peer collaboration on children’s problem-solving ability. British Journal of Educational Psychology 75,157-169.
Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C. & Suleman, R. (2012). Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expectations 17 (5) 637-650.
Sun, C.T., Wang, D.Y. & Chan, H.L. (2011). How digital scaffolds in games direct problem-solving behaviors. Computers & Education 57, 2118-2125.
Yelland, N. & Masters, J. (2007). Rethinking scaffolding in the information age. Computers & Education 48, 362-382.
Mitra, S., Dangwal, R., Chatterjee, S., Jha, S., Bishit, R.S. & Kapur, P. (2005). Acquisition of computing literacy on shared public computers: children and the ‘hole in the wall’. Australasian Journal of Educational Technology 21 (3) 407-426.
Raddick, M.J., Bracey, G., Gay, P.L., Lintott, C.J., Murray, P., Schawinski, K., Szalay, A.S. & Vandenberg, J. (2010). Galaxy Zoo: Exploring the Motivations of Citizen Science Volunteers. Astronomy Education Review 9 (1) doi: 10.3847/AER2009036.
Borne, K.D., Fortson, L., Gay, P., Lintott, C., Raddick, M.J. & Wallin, J. (2009). The Zooniverse. American Geophysical Union Fall Meeting Abstracts http://adsabs.harvard.edu/cgi-bin/nph-bib_query?bibcode=2009AGUFMED51C..07B.
Cardamone, C., Schawinski, K., Sarzi, M., et al. (2009). Galaxy Zoo Green Peas: discovery of a class of compact extremely star-forming galaxies. Monthly Notices of the Royal Astronomical Society 399, 1191-1205.
Christian, C., Lintott, C. & Smith, A. (2012). Citizen science: Contributions to astronomy research. arXiv Preprint arXiv Published Online First: 2012. http://arxiv.org/abs/1202.2577 (accessed 1 Jun2013).
Gossec, L. & Richards, P. (2011). Guiding Principles for Patient Research Partner Participation in OMERACT. 2011,1-3.
Kinmonth, A.L., Woodcock, A., Griffin, S., Spiegal, N. & Campbell, M.J. (1998). Randomised controlled trial of patient centred care of diabetes in general practice: impact on current wellbeing and future disease risk. The Diabetes Care From Diagnosis Research Team. British Medical Journal 317 (7167) 1202-1208.
Hodgkinson, J., Mant, J., Martin, U., Guo, B., Hobb, F.D., Deeks, J.J., Henegan, C., Roberts, N. & McManus, R.J. (2011). Relative effectiveness of clinic and home blood pressure monitoring compared with ambulatory blood pressure monitoring in diagnosis of hypertension: systematic review. British Medical Journal 342, d3621.
Battersby, M., Von Korff, M., Schaefer, J., Davis, C., Ludman, E., Greene, S.M., Parkerton, M. & Wagner, E.H. (2010). Twelve evidence-based principles for implementing self-management support in primary care. Joint Commission Journal on Quality and Patient Safety 36 (12) 561-570.
ORAC. (2012). Patient-led ‘clinical trials’ versus clinical research (2012 edn). Science Blogs. http://scienceblogs.com/insolence/2012/08/02/patient-led-clinical-trials-versus-clinical-research-2012-edition/
Janssens A.C. & Kraft, P. (2012). Research conducted using data obtained through online communities: ethical implications of methodological limitations. PLoS Med 9 (10) e1001328.
Goldacre, B. (2007). Tell us the truth about nutritionists. British Medical Journal 334, 292.
Price, A. (2014). From Junk Science Pawn to Public-Led Trials. Journal of the Bahrain Medical Society 25, 113-115.
Sipp, D. (2011). Stem cell stratagems in alternative medicine. Regenerative Medicine 6 (3) 407-414.
Tallon, D., Chard, J. & Dieppe, P. (2000). Relation between agendas of the research community and the research consumer. Lancet 355, 2037-2040.
Chalmers, I., Atkinson, P., Fenton, M., Firkins, L., Crowe, S. & Cowan, K. (2013). Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003-2013. Journal of the Royal Society of Medicine 106 (12) 482-491.
Petit-Zeman, S. & Locock, L. 92013). Health care: Bring on the evidence. Nature 501, 160-161.
Orri, M., Lipset, C.H., Jacobs, B.P., Costello, A.J. & Cummings, S.R. (2014). Web-based trial to evaluate the efficacy and safety of tolterodine ER 4mg in participants with overactive bladder: REMOTE trial. Contemporary Clinical Trials 38 (2) 190-197.
Jacobs, B.P., Bent, S., Tice, J.A., Blackwell, T. & Cummings, S.R. (2005). An Internet-Based Randomized, Placebo-Controlled Trial of Kava and Valerian for Anxiety and Insomnia. Medicine 84 (4) 197-207.
Sjöström, M., Umefjord, G., Stenlund, H., Carlbring, P., Andersson, G. & Samuelsson, E. (2013). Internet-based treatment of stress urinary incontinence: A randomised controlled study with focus on pelvic floor muscle training. BJU International 112 (3) 362-372.
Bjork A.B., Sjostrom, M., Johansson, E.E., Samuelsson, E. & Umefjord, G. (2014). Women’s Experiences of Internet-Based or Postal Treatment for Stress Urinary Incontinence. Qualitative Health Research 24 (4) 484-493.
McManus R. (2015). Ethics Rounds Examines Need for National System Protecting Research Subjects - The NIH Record - February 27, 2015. NIH Record http://nihrecord.nih.gov/newsletters/2015/02_27_2015/story1.htm (accessed 16 May 2015).
Permuth-Wey, J. & Borenstein, A.R. (2009). Financial remuneration for clinical and behavioral research participation: ethical and practical considerations. Annals of Epidemiology 19 (4) 280-285.
Department of Health and Human Services, Services H. (2015). International Compilation of Human Research Protections. DHSS U.S. Department of Health and Human Services 2015. http://www.hhs.gov/ohrp/international/
Gillies, K., Elwyn, G. & Cook, J. (2014). Making a decision about trial participation: the feasibility of measuring deliberation during the informed consent process for clinical trials. Trials 15, 307.
Price, A. & Burls, A. (2015). PLOT-IT Public Led Online Trials Infrastructure and Tools. In: Force 2015. Oxford UK: Force 2015. doi:DOI: 10.13140/2.1.1992.6082
Brice, A., Price, A. & Burls, A. (2014). Creating a Database of Internet-Based Clinical Trials to Support a Public-Led Research Programme. Medicine 2.0 Conference Published Online First: 22 May 2014. http://www.medicine20congress.com/ocs/index.php/med/med2014b/paper/view/2515 (accessed 7 Dec 2014).
Burls, A. & Price, A. (2013). The International Network for Knowledge about Wellbeing. http://www.ithinkwell.org/
Goldacre, B. (2008). Bad Science. London, UK: Fourth Estate.
Haynes, L., Service, O., Goldacre, B. & Torgerson, D. (2012). Test, Learn, Adapt: Developing Public Policy with Randomised Controlled Trials. London, UK: Cabinet Office Behavioural Insights Team.
Grimshaw, J.M., Eccles, M.P., Lavis, J.N., Hill, S.J. & Squires, J.E. (2012). Knowledge translation of research findings. Implementation Science 7, 50.
DOI: http://dx.doi.org/10.5750/ejpch.v4i2.1095