WikiBuild: a new application to support patient and health care professional involvement in the development of patient support tools

Patrick Michel Archambault, Patrick Michel Archambault

Abstract

Active patient and public involvement as partners in their own health care and in the development of health services is key to achieving a health care system that is responsive to patients' needs and values. It promotes better use of the health care system, and improves health outcomes, quality of life and patient satisfaction. By involving patients and health care professionals as partners in the creation and updating of patient health support tools, wikis--highly accessible, interactive vehicles of communication--have the potential to empower users to implement these support tools in daily life. Acknowledging the potential of wikis, and recognizing that they capitalize on the free and open access to information, scientists, opinion leaders and patient advocates have suggested that wikis could help decision-making constituencies improve the delivery of health care. They might also decrease its cost and improve access to knowledge within developing countries. However, little is known about the efficacy of wikis in helping to attain these goals. There is also a need to know more about the intention of patients and health care workers to use wikis, in what circumstances and what factors will influence their use of wikis. In this issue of the Journal of Medical Internet Research, Gupta et al describe how they developed and tested a new wiki-inspired application to improve asthma care. The researchers involved patients with asthma, primary care physicians, pulmonologists and certified asthma educators in the construction of an asthma action plan. Their paper--entitled "WikiBuild: a new online collaboration process for multistakeholder tool development and consensus building"--is the first description of a wiki-inspired technology built to involve patients and health care professionals in the development of a patient support tool. This innovative study has made important contributions toward how wikis could be generalized to involve multiple stakeholders in the development of other knowledge translation tools such as clinical practice guidelines or decision aids. More specifically, Gupta et al have uncovered potential action mechanisms toward increasing usage of these tools by patients and health care professionals. These are decreasing hierarchical influences, increasing usability and adapting a tool to local context. More research is now needed to determine if the use of the resulting wiki-developed plan will actually be higher than a plan developed using other methods. Furthermore, there is also a need to assess the intention of participants to continue using wiki-based processes on an ongoing basis. It is in this dynamic and continuous retroaction loop that the support tool users--both patients and health care professionals--can adapt and improve the product after its real-life shortcomings are revealed and as new evidence becomes available. As such, a wiki would be more than a simple patient support development tool, but could also become a dynamic and interactive repository and delivery tool that would facilitate ongoing and sustainable patient and professional engagement.

Conflict of interest statement

None declared

References

    1. Légaré F, Boivin A, van der Weijden T, Packenham C, Tapp S, Burgers J. A knowledge synthesis of patient and public involvement in clinical practice guidelines: study protocol. Implement Sci. 2009;4:30. doi: 10.1186/1748-5908-4-30. 1748-5908-4-30
    1. van der Weijden T, Légaré F, Boivin A, Burgers JS, van Veenendaal H, Stiggelbout AM, Faber M, Elwyn G. How to integrate individual patient values and preferences in clinical practice guidelines? A research protocol. Implement Sci. 2010;5:10. doi: 10.1186/1748-5908-5-10. 1748-5908-5-10
    1. British Medical Association. 2011. Jun, [2011-09-13]. Patient and Public Involvement - A Toolkit for Doctors .
    1. Harkness J. Patient involvement: a vital principle for patient-centred health care. World Hosp Health Serv. 2005;41(2):12–6, 40.
    1. Eysenbach G. Medicine 2.0: social networking, collaboration, participation, apomediation, and openness. J Med Internet Res. 2008;10(3):e22. doi: 10.2196/jmir.1030. v10i3e22
    1. Heilman JM, Kemmann E, Bonert M, Chatterjee A, Ragar B, Beards GM, Iberri DJ, Harvey M, Thomas B, Stomp W, Martone MF, Lodge DJ, Vondracek A, de Wolff JF, Liber C, Grover SC, Vickers TJ, Meskó B, Laurent MR. Wikipedia: a key tool for global public health promotion. J Med Internet Res. 2011;13(1):e14. doi: 10.2196/jmir.1589. v13i1e14
    1. Czarnecka-Kujawa K, Abdalian R, Grover SC. M1042 The quality of open access and open source Internet material in gastroenterology: is Wikipedia appropriate for knowledge transfer to patients? Gastroenterology. 2008;134(4, Suppl 1):A325–A326. doi: 10.1016/S0016-5085(08)61518-8.
    1. Wright A, Bates DW, Middleton B, Hongsermeier T, Kashyap V, Thomas SM, Sittig DF. Creating and sharing clinical decision support content with Web 2.0: Issues and examples. J Biomed Inform. 2009 Apr;42(2):334–46. doi: 10.1016/j.jbi.2008.09.003.S1532-0464(08)00125-1
    1. de Silva V, Hanwella R. Why are we copyrighting science? BMJ. 2010;341:c4738.
    1. Godlee F, Pakenham-Walsh N, Ncayiyana D, Cohen B, Packer A. Can we achieve health information for all by 2015? Lancet. 2004;364(9430):295–300. doi: 10.1016/S0140-6736(04)16681-6.S0140673604166816
    1. Archambault PM, Légaré F, Lavoie A, Gagnon MP, Lapointe J, St-Jacques S, Poitras J, Aubin K, Croteau S, Pham-Dinh M. Healthcare professionals' intentions to use wiki-based reminders to promote best practices in trauma care: a survey protocol. Implement Sci. 2010;5:45. doi: 10.1186/1748-5908-5-45. 1748-5908-5-45
    1. Archambault PM, Van De Belt TH, Grajales III FJ, Eysenbach G, Aubin K, Gold I, Kuziemsky CE, Turgeon AF, Poitras J, Faber MJ, Kremer JA, Heldoorn M, Bilodeau A, Légaré F. Wikis and collaborative writing applications in healthcare: a scoping review protocol. JMIR Res Protoc. 2012 doi: 10.2196/jmir.1993. (Forthcoming)
    1. Gupta S, Wan FT, Newton D, Bhattacharyya OK, Chignell MH, Straus SE. WikiBuild: a new online collaboration process for multistakeholder tool development and consensus building. J Med Internet Res. 2011;13(4):e108. doi: 10.2196/jmir.1833. v13i4e108
    1. Légaré F, Ratté S, Stacey D, Kryworuchko J, Gravel K, Graham ID, Turcotte S. Interventions for improving the adoption of shared decision making by healthcare professionals. Cochrane Database Syst Rev. 2010;(5):CD006732. doi: 10.1002/14651858.CD006732.pub2.
    1. Gibson PG, Powell H, Coughlan J, Wilson AJ, Abramson M, Haywood P, Bauman A, Hensley MJ, Walters EH. Self-management education and regular practitioner review for adults with asthma. Cochrane Database Syst Rev. 2003;(1):CD001117. doi: 10.1002/14651858.CD001117.
    1. Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev. 2006;3:CD004563. doi: 10.1002/14651858.CD004563.pub2.
    1. Thomas Goetz TED Talks. 2011. [2011-09-13]. It's Time to Redesign Medical Data. Jan 27 .
    1. Schwartz LM, Woloshin S, Welch HG. Using a drug facts box to communicate drug benefits and harms: two randomized trials. Ann Intern Med. 2009 Apr 21;150(8):516–27. 0000605-200904210-00106
    1. Priedhorsky R, Chen J, Lam SK, Panciera K, Terveen L, Riedl J. Creating, destroying, and restoring value in Wikipedia. Proceedings; 2007 International ACM Conference on Supporting Group Work; November 4-7, 2007; Sanibel Island, FL, USA. 2007.
    1. San Martín-Rodríguez L, Beaulieu MD, D'Amour D, Ferrada-Videla M. The determinants of successful collaboration: a review of theoretical and empirical studies. J Interprof Care. 2005 May;19 Suppl 1:132–47. doi: 10.1080/13561820500082677.RG065251635761H7
    1. Légaré F, Stacey D, Gagnon S, Dunn S, Pluye P, Frosch D, Kryworuchko J, Elwyn G, Gagnon MP, Graham ID. Validating a conceptual model for an inter-professional approach to shared decision making: a mixed methods study. J Eval Clin Pract. 2011 Aug;17(4):554–64. doi: 10.1111/j.1365-2753.2010.01515.x.JEP1515
    1. Van De Belt TH, Faber MJ, Knijnenburg J, Nelen WL, Kremer JA. Wikis as an opportunity to improve patient participation in developing information leaflets: a demonstration project in infertility patients. Medicine 2.0; Sept 16-18, 2011; Stanford, CA, USA. 2011.

Source: PubMed

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