Scientific Publications Database

Article Title: Patients as research partners in chronic obstructive pulmonary disease and asthma research: Priorities, challenges and recommendations from asthma and COPD patients
Authors: Poureslami, Iraj; Pakhale, Smita; Lavoie, Kim L.; Gupta, Samir; Bacon, Simon; Aaron, Shawn D.; To, Teresa; Boulet, Louis-Philippe; FitzGerald, J. Mark
Journal: CANADIAN JOURNAL OF RESPIRATORY CRITICAL CARE AND SLEEP MEDICINE Volume 2 Issue 3
Date of Publication:2018
Abstract:
RATIONALE: Patients play an important role in improving outcomes of health interventions by actively involved in the research process. However, there is a paucity of empirical data on the extent to which patients assume such a role in Respiratory Research (RR). Thus a framework to guide the engagement of patient's needs to be developed to further a patient-centered RR agenda.OBJECTIVE: To explore the perspectives of patients with COPD and asthma re the factors that could affect their engagement in the research process.METHODS: Eight focus groups were conducted (23 asthma and 20 COPD patients) across Canada to discuss: patients' willingness to engage as research partners; their research priorities; practical considerations for their involvement in research; desired outcomes from their involvement; and willingness to participate in a patient-oriented network. Focus group data were analyzed using thematic analysis to identify principles of a patient engagement framework.RESULTS: Eight key principles emerged that could affect patient involvement in RR, including: clarify the nature of involvement; integrate patients' disease-related knowledge and perspective; engage early and frequently; consider patients' views and beliefs; include diverse patient populations; emphasize on meaningful outcomes; conduct patient-oriented knowledge translation; and patient-to-patient dissemination. Also, three broad research priorities were suggested: origins of disease; development of new therapies; and patient education.CONCLUSIONS: Patients showed interest in active involvement in research process and identified key principles to facilitate patient engagement in the RR. Further research is needed to examine the factors influencing patient engagement, the limits and the possible barriers and promoters.