Electronic Thesis and Dissertation Repository

Thesis Format



Master of Health Information Science


Health Information Science


Burkell, Jacquelyn

2nd Supervisor

Oudshoorn, Abe


Involving healthcare consumers (HCCs) in clinical practice guideline (CPG) development can lead to identification of topics that guidelines should consider. To evaluate the strategies being used to involve HCCs in CPG development, a description of these strategies is needed. This study utilized qualitative description to analyze CPGs and related documents. Professionals involved in CPG development were also interviewed. Patients, family members, and informal caregivers have been involved in the formulation of recommendations, CPG reviewing and editing, and through use of patient resources. According to the results, involving HCCs is done to incorporate patient preferences and values into CPGs, and to improve their impact. By failing to provide opportunity for ongoing communication between stakeholders, some strategies may fail to ensure that input from HCCs is considered. Strategies being used will need to be evaluated in the future to ensure they are achieving the desired effects.

Summary for Lay Audience

Clinical practice guidelines (CPGs) are documents meant to advise healthcare providers on the most effective options for the management of illness. Involving patients, their family members, and members of the general public, collectively referred to as healthcare consumers (HCCs), in the process of developing CPGs may help in identifying important issues these documents should address. Involving HCCs in the development of CPGs can also help to make patients feel empowered, and help them work together with healthcare providers in decision making. In order to evaluate the effects of involving HCCs in CPG development, a descriptions of current strategies is needed. This study therefore investigated how and why HCCs have been involved in the development of CPGs for the management of mood and anxiety disorders within Canada. Clinical practice guidelines and documents describing their development were analyzed to find answers to the research question. Professionals involved in CPG development, including authors and research advisors, also contributed information through participating in interviews or completing questionnaires. Results of this study indicate that patient resources were created to accompany the CPGs analyzed for this study. Patient resources are tools such as decision aids or CPG summaries meant to advise patients or their loved ones on their treatment options. Since these CPGs were released, additional strategies have been used to involve different types of HCCs throughout different stages of CPG development. Results of this study also indicate that currently, HCCs are involved in CPG development in order to identify information or treatment outcomes that are important to patients. A greater focus on facilitating the partnership between patients and healthcare providers could help to increase HCC involvement in CPG development in the future. In addition, future efforts to involve HCCs in CPG development must ensure that input from these stakeholders is gathered in a way that ensures it is acted upon.

Creative Commons License

Creative Commons Attribution 4.0 License
This work is licensed under a Creative Commons Attribution 4.0 License.