Background: The increasing quantity of initiatives involve patients in the development of clinical practice guidelines (CPGs). However, the way applied patient involvement is important to achieving a quality patient-oriented CPGs. Patient preference is defined as the appraisal of an individual who is informed and knowledgeable about the probabilities and severity of the effects and risks of interventions, and about process and outcome aspects of healthcare.
Objectives: The purpose is to present a approach for patient involvement that includes both robust patient consultation and participation. This approach is based on the Kazakhstan's experience in the development of three CPGs contained in the Kazakhstan CPGs Development Program, which deemed it a beneficial nation-wide patient involvement initiative.
Methods: Patient consultation in the first CPG development phase mixes quantitative and qualitative primary analysis techniques as well as a systematic review of patient-perspective studies. Participation depends on patients and patient representatives as members of the guideline development groups in all development phases at the same level as professionals.
Results: Patients and patient representatives provided relevant information on their perspectives, experiences with the illness, social conditions, patterns, values and preferences. They collaborated in different CPG development phases, including setting the scope and objectives, defining key research questions, writing and reviewing recommendations, developing patients' versions and the dissemination of CPGs.
Conclusions: The used approach allows for patient-oriented CPG development, but requires relevant knowledge of qualitative research tools (primary research and systematic review of qualitative evidence) for developers. It is also significant to have specific support for patients, previously selected with eligibility criteria, to facilitate an effective engagement, providing clear guidance on their tasks and ensuring opportunities to attend CPG training.