Barriers to patient involvement in health service planning and evaluation: An exploratory study Anna R. Gagliardi a, * , Louise Lemieux-Charles b , Adalsteinn D. Brown b , Terrence Sullivan b , Vivek Goel b a Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, Room C8-30, Toronto, Ontario, Canada M4N3M5 b Department of Health Policy, Management & Evaluation, Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada Received 16 April 2007; received in revised form 11 August 2007; accepted 16 September 2007 Abstract Objective: Patient involvement in health service planning and evaluation is considered important yet not widely practiced. This study explored stakeholder beliefs about patient participation in performance indicator selection to better understand hypothesized barriers. Methods: Interviews with 30 cancer patients and health professionals from two teaching hospitals were analyzed qualitatively. Results: All groups believed patients, not members of the public, should be involved in the selection of indicators. Ongoing, interactive methods such as committee involvement, rather than single, passive efforts such as surveys were preferred. Health professionals recommended patients assume a consultative, rather than decision-making role. Older patients agreed with this. Conclusion: Variable patient interest, health professional attitudes, and a lack of insight on appropriate methods may be limiting patient involvement in this, and other service planning and evaluation activities. More research is required to validate expressed views among the populations these stakeholders represent, and to establish effective methods for engaging patients. Practice implications: Efforts to encourage a change in health professional attitude may be required, along with dedicated organizational resources, coordinators and training. Methods to engage patients should involve deliberation, which can be achieved through modified Delphi panel or participatory research approaches. # 2007 Elsevier Ireland Ltd. All rights reserved. Keywords: Patient participation; Decision-making; Health care evaluation; Quality indicators 1. Introduction 1.1. Patient involvement in health care There is now a sizeable body of research exploring how patient values can be incorporated into treatment planning [1– 3]. The underlying principle of shared decision-making is that physicians and patients exchange information about treatment options and preferences, thusly negotiating the decision- making process [4]. The involvement of patients in health care service planning and evaluation is thought to increase accountability to tax-payers, better identify and meet their needs, and broaden the value base underlying evaluation, yet we know far less about how this can be best accomplished [5,6]. If health care is to be truly patient-centered, patients must be provided with opportunities to influence the organization and delivery of services through involvement in service planning or evaluation [7]. Studies examining the nature of patient participation in service planning have found that most activities are limited to various forms of consultation, rather than interactive partnerships as are advocated for treatment decision-making [8,9]. Patient involvement in service evalua- tion has largely been restricted to completing satisfaction surveys [10]. Patient satisfaction is viewed by some as an incomplete and inaccurate reflection of patient views on quality of care received and, in particular, has been critiqued for not involving patients in the development of assessment tools [11]. 1.2. Health service evaluation Performance measurement has become an increasingly common strategy worldwide by which to evaluate, and report www.elsevier.com/locate/pateducou Patient Education and Counseling 70 (2008) 234–241 * Corresponding author. Tel.: +1 416 480 6100; fax: +1 416 480 6002. E-mail address: anna.gagliardi@sunnybrook.ca (A.R. Gagliardi). 0738-3991/$ – see front matter # 2007 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2007.09.009