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Canadian Journal of Respiratory, Critical Care, and Sleep Medicine
Revue canadienne des soins respiratoires et critiques et de la médecine du sommeil
Volume 2, 2018 - Issue 3
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Original Research

Patients as research partners in chronic obstructive pulmonary disease and asthma research: Priorities, challenges and recommendations from asthma and COPD patients

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References

  • Health Canada. Quest for quality in Canadian health care. Continious quality improvement. 2nd ed. 2000. http://www.hc-sc.gc.ca/hcs-sss/alt_formats/hpb-dgps/pdf/pubs/2000-qual/quest-quete-eng.pdf. Accessed March 6, 2018.
  • Barello S, Triberti S, Graffigna G, et al. eHealth for patient engagement: a systematic review. Front Psychol. 2016;6:2013. doi:10.3389/fpsyg.2015.02013. PMID:26779108.
  • Pakhale S, Boyd R, Haddad J, et al. The Ottawa Citizen Engagement and Action Model (OCEAM): a citizen engagement strategy operationalized through the Participatory Research in Ottawa, Management and Point-of-care of Tobacco (PROMPT) study. Res Involv Engagem. 2016;2(1):1–18. doi:10.1186/s40900-016-0034-y. PMID:29062502.
  • Barry MJ, Edgman-Levitan S. Shared decision making — the pinnacle of patient-centered care. N Engl J Med. 2012;366:780–781. doi:10.1056/NEJMp1109283. PMID:22375967.
  • Wilson SR, Strub P, Buist AS, et al. Shared treatment decision making improves adherence and outcomes in poorly controlled asthma. Am J Respir Crit Care Med. 2010;181(6):566–577. doi:10.1164/rccm.200906-0907OC. PMID:20019345.
  • Stewart R, Oliver S. A Systematic Map of Studies of Patients' and Clinicians' Research Priorities. London, UK: James Lind Alliance; 2008.
  • Partridge N, Scadding J. The James Lind Alliance: patients and clinicians should jointly identify their priorities for clinical trials. Lancet. 2004;364:1923–1924. doi:10.1016/S0140-6736(04)17494-1. PMID:15566996.
  • Lwyn G, Crowe S, Fenton M, et al. Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions. J Eval Clin Pract. 2010;16:627–631. PMID:20482747.
  • Caron-Flinterman JF, Broerse JE, Teerling J, Bunders JF. Patients' priorities concerning health research: the case of asthma and COPD research in the Netherlands. Health Expect. 2005;8(3):253–263. doi:10.1111/j.1369-7625.2005.00337.x. PMID:16098155.
  • Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–1166. doi:10.1111/hex.12090. PMID:23731468.
  • Crowe S, Fenton M, Hall M, Cowan K, Chalmers I. Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch. Res Involv Engagem. 2015;1(1):2. doi:10.1186/s40900-015-0003-x. PMID:29062491.
  • Domecq JP, Prutsky G, Elraiyah T, et al. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89–97. doi:10.1186/1472-6963-14-89. PMID:24568690.
  • Mockford C, Staniszewska S, Griffiths F, Herron-Marx S. The impact of patient and public involvement on UK NHS health care: a systematic review. Int J Qual Health Care. 2012;24(1):28–38. doi:10.1093/intqhc/mzr066. PMID:22109631.
  • Garces G, Prutsky G, Wang Z, et al. Eliciting patient perspective in patient-centered outcomes research: a meta narrative systematic review. 2012. http://www.pcori.org/assets/Eliciting-Patient-Perspective-in-Patient-Centered-Outcomes-Research-A-Meta-Narrative-Systematic-Review.pdf. Accessed March 6, 2018.
  • Oliver S, Clarke-Jones L, Rees R, et al. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technol Assess. 2004;8(15):1–148. doi:10.3310/hta8150. PMID:15080866.
  • Pelaez S, Aulls MW, Pelaez S, et al. Similarities and differences between asthma health care professional and patient views regarding medication adherence. Can Respir J. 2014;21(4):221–226. doi:10.1155/2014/738654. PMID:24712015.
  • Russell AM, Sprangers MA, Wibberley S, Snell N, Rose DM, Swigris JJ. The need for patient-centred clinical research in idiopathic pulmonary fibrosis. BMC Med. 2015;24(13):240. doi:10.1186/s12916-015-0475-4.
  • Boivin A. Patient and Public Involvement in Healthcare Improvement. Ph.D thesis, Radboud Universiteit Nijmegen, Netherlands; 2012. http://repository.ubn.ru.nl/bitstream/2066/95112/1/95112.pdf Accessed October 16 2013.
  • Elberse J, Laan D, de Buning TC, Teunissen T, Broerse J, de Boer W. Patient involvement in agenda setting for respiratory research in the Netherlands. Eur Respir J. 2012;40:508–510. doi:10.1183/09031936.00018812. PMID:22855474.
  • Poureslami I, Rootman I, Doyle-Waters MM, Nimmon L, FitzGerald JM. Health literacy, language, and ethnicity-related factors in newcomer asthma patients to canada: a qualitative study. J Immigr Minor Health. 2011;13(2):315–322. doi:10.1007/s10903-010-9405-x. PMID:20938742.
  • Poureslami I, Nimmon L, Doyle-Waters MM, FitzGerald JM. Using community-based participatory research (CBPR) with ethno-cultural groups as a tool to develop culturally and linguistically appropriate asthma educational material. Divers Equal Health Care. 2011;8:203–215.
  • Poureslami I, Nimmon L, Doyle-Waters M, et al. Effectiveness of educational interventions on asthma self-management in Punjabi and Chinese asthma patients: a randomized controlled trial. J Asthma. 2012;49(5):542–551. doi:10.3109/02770903.2012.682125. PMID:22715910.
  • Poureslami I, FitzGerald JM. Hearing community voice: methodological issues in developing asthma self-management educational materials for immigrant communities. In: Agyemang C, Airhihenbuwa CO, Aikins AD, eds. Ethnicity: Theories, International Perspectives and Challenges. New York, NY: NOVA; 2013:59–84.
  • Poureslami IM, Shum J, Cheng N, FitzGerald JM. Does culture or illness change a smoker's perspective on cessation? Am J Health Behav. 2014;38(5):657–667. doi:10.5993/AJHB.38.5.3. PMID:24933135.
  • Shum J, Poureslami I, Cheng N, FitzGerald JM. Responsibility for COPD self-management in ethno-cultural communities: the role of patient, family member, care provider, and system. Divers Equal Health Care. 2014;11(3/4):201–214.
  • Poureslami I, Kwan S, Lam S, Khan NA, Fitzgerald JM. Assessing the effect of culturally specific audiovisual educational interventions on attaining self-management skills for chronic obstructive pulmonary disease in Mandarin-and Cantonese-speaking patients: a randomized controlled trial. Int J COPD. 2016;11(1):1811–1822. doi:10.2147/COPD.S105408.
  • Barbour RS. Making sense of focus groups. Med Educ. 2005;39(7):742–750. doi:10.1111/j.1365-2929.2005.02200.x. PMID:15960795.
  • Patton MQ. Qualitative Research & Evaluation Methods: Integrating Theory and Practice. Thousand Oaks, CA: SAGE Publications; 2015.
  • Ryan RM, Deci EL. Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol. 2000;55(1):68–78. doi:10.1037/0003-066X.55.1.68. PMID:11392867.
  • Patrick H, Williams GC. Self-determination theory: its application to health behavior and complementarity with motivational interviewing. Int J Behav Nutr Phys Act. 2012;9:18. doi:10.1186/1479-5868-9-18. PMID:22385676.
  • Hibbard JH, Mahoney ER, Stock R, Tusler M. Do increases in patient activation result in improved self-management behaviors? Health Serv Res. 2007;42(4):1443–1463. doi:10.1111/j.1475-6773.2006.00669.x. PMID:17610432.
  • Horowitz CR, Robinson M, Seifer S. Community-based participatory research from the margin to the mainstream: are researchers prepared? Circulation. 2009;119(19):2633–2642. doi:10.1161/CIRCULATIONAHA.107.729863. PMID:19451365.
  • Leech NL, Onwuegbuzie AJ. Beyond constant comparison qualitative data analysis: using NVivo. Sch Psychol Q. 2011;26(1):70–84. doi:10.1037/a0022711.
  • Berg BL, Lune H. Qualitative Research Methods for the Social Sciences. Harlow, UK: Pearson Education Limited; 2011.
  • Pakhale S, Boyd R, Haddad J, et al. The Ottawa Citizen Engagement and Action Model (OCEAM): a citizen engagement strategy operationalized through the Participatory Research in Ottawa, Management and Point-of-care of Tobacco (PROMPT) Study. Res Involv Engagem. 2016;2(1):1–18. doi:10.1186/s40900-016-0034-y. PMID:29062502.
  • Canadian Respiratory Research Network. Research and Publications. 2017. http://respiratoryresearchnetwork.ca/. Accessed March 6, 2018.
  • Barry MJ, Edgman-Levitan S. Shared decision making — the pinnacle of patient-centered care. N Engl J Med. 2012;366:780–781. March 1, 2012. doi:10.1056/NEJMp1109283. PMID:22375967.
  • Caron-Flinterman JF, Broerse JEW, Teerling J, et al. Stakeholder participation in health research agenda setting: the case of asthma and COPD research in the Netherlands. Sci Public Policy. 2006;33(4):291–304 doi:10.3152/147154306781778993.
  • Coulter A, Ellins J. Patient-focused interventions A review of the evidence. Picker Institute Europe August 2006. The Health Foundation, UK.
  • Patient-Centered Outcomes Research Institute. Effectiveness of collaborative goal-setting versus IMPaCT community health worker support for improving chronic disease outcomes. 2014. http://www.pcori.org/research-results/2014/effectiveness-collaborative-goal-setting-versus-impact-community-health-worker. Accessed March 6, 2018.
  • van Doorslaer E, Masseria C, Koolman X, Group OHER. Inequalities in access to medical care by income in developed countries. CMAJ. 2006;174(2):177–183. doi:10.1503/cmaj.050584. PMID:16415462.

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