How patient centric is health policy development? The case of the Parliamentary Inquiry into Sleep Health Awareness in Australia
Aaron Schokman
A B * , Nick Glozier A , Melissa Aji C , Yu Sun Bin B D , Kristina Kairaitis E F and Janet M. Y. Cheung G
A Central Clinical School, The Faculty of Medicine and Health, The University of Sydney, NSW, Australia.
B Sleep Theme, Charles Perkins Centre, The University of Sydney, NSW, Australia.
C Brain and Mind Centre, The University of Sydney, NSW, Australia.
D Northern Clinical School, Faculty of Medicine and Health, University of Sydney, NSW, Australia.
E Ludwig Engel Centre for Respiratory Research, Westmead Institute for Medical Research, Westmead, NSW, Australia.
F Department of Respiratory and Sleep Medicine, The University of Sydney at Westmead Hospital, Westmead, NSW, Australia.
G School of Pharmacy, Faculty of Medicine and Health, The University of Sydney, NSW, Australia.
Australian Health Review 46(2) 233-243 https://doi.org/10.1071/AH21156
Submitted: 1 May 2021 Accepted: 3 February 2022 Published: 5 April 2022
© 2022 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of AHHA.
Abstract
Objective Parliamentary inquiries into health-related issues empower everyday Australians to contribute to the development and reform of health policy. We explored how patient and family/carers concerns are translated by this process, using a less well-known disease, narcolepsy, as an example.
Methods Written submissions made to the Parliamentary Inquiry into Sleep Health Awareness in Australia 2018 by self-identified patients or family/carers with narcolepsy (n = 13) were extracted and thematically analysed using the Framework Approach. Each submission was systematically coded and abstracted into emergent themes before being evaluated against the final policy recommendations.
Results Although patients and their family/carers prioritised issues that affected their daily lives (i.e. mental health sequela, workplace accommodations), the policy recommendations in the report focused mainly on issues of healthcare infrastructure, funding and engagement. Our analysis highlighted several barriers that patients and their family/carers face when contributing to this part of healthcare policy formation.
Conclusions Our findings suggest that the parliamentary inquiry process in its current form is not an ideal vehicle by which patients and family/carers can contribute or influence healthcare policy. Despite calling for submissions from patients and their family/carers, the final report and subsequent health policy recommendations made by the inquiry do not appear to be patient-centric or reflective of the submissions written by these stakeholders. Increased transparency, development of processes to balance stakeholder priorities and improved accessibility for stakeholders to participate are needed if health-related parliamentary inquiries are to produce healthcare policy that ultimately meets the needs of patients and family/carers.
Keywords: family and carers, healthcare, health policy, narcolepsy, parliamentary inquiry, patient centred, sleep health awareness, stakeholder engagement.
References
[1] Lemke AA, Harris-Wai JN. Stakeholder engagement in policy development: challenges and opportunities for human genomics. Genet Med 2015; 17 949–57.| Stakeholder engagement in policy development: challenges and opportunities for human genomics.Crossref | GoogleScholarGoogle Scholar | 25764215PubMed |
[2] Canadian Medical Association. Health Care Transformation in Canada: Change that Works, Care That Lasts. 2010. Available at https://policybase.cma.ca/viewer?file=%2Fmedia%2FPolicyPDF%2FPD10-05.pdf#page=1
[3] Petkovic J, Riddle A, Akl EA, Khabsa J, Lytvyn L, Atwere P, et al. Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation. Syst Rev 2020; 9 21
| Protocol for the development of guidance for stakeholder engagement in health and healthcare guideline development and implementation.Crossref | GoogleScholarGoogle Scholar | 32007104PubMed |
[4] Cluzeau F, Wedzicha JA, Kelson M, Corn J, Kunz R, Walsh J, et al. Stakeholder involvement: how to do it right: article 9 in integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report. Proc Am Thorac Soc 2012; 9 269–73.
| Stakeholder involvement: how to do it right: article 9 in integrating and coordinating efforts in COPD guideline development. An official ATS/ERS workshop report.Crossref | GoogleScholarGoogle Scholar | 23256170PubMed |
[5] Parliament of Australia. Infosheet 4 – Committees [updated August 2020]. 2020. Available at https://www.aph.gov.au/About_Parliament/House_of_Representatives/Powers_practice_and_procedure/00_-_Infosheets/Infosheet_4_-_Committees
[6] Department of the House of Representatives. House of Representatives Practice, 7th edn. Canberra: Commonwealth of Australia; 2018.
[7] Deloitte Access Economics. Asleep on the job: costs of inadequate sleep in Australia. Deloitte Access Economics, Sleep Health Foundation; 2017. Available at https://www.sleephealthfoundation.org.au/files/Asleep_on_the_job/Asleep_on_the_Job_SHF_report-WEB_small.pdf
[8] House of Representatives Standing Committee on Health, Aged Care and Sport. Bedtime Reading: Inquiry into Sleep Health Awareness in Australia. Commonwealth of Australia; 2019. Available at https://parlinfo.aph.gov.au/parlInfo/download/committees/reportrep/024220/toc_pdf/BedtimeReading.pdf;fileType=application%2Fpdf
[9] Lacaze P, Millis N, Fookes M, Zurynski Y, Jaffe A, Bellgard M, et al. Rare disease registries: a call to action. Intern Med J 2017; 47 1075–9.
| Rare disease registries: a call to action.Crossref | GoogleScholarGoogle Scholar | 28891182PubMed |
[10] Prevalence of rare diseases: bibliographic data. Orphanet Report Series, Rare Diseases collection, Number 1: Diseases listed in alphabetical order. 2022. Available at http://www.orpha.net/orphacom/cahiers/docs/GB/Prevalence_of_rare_diseases_by_alphabetical_list.pdf
[11] Dauvilliers Y, Arnulf I, Mignot E. Narcolepsy with cataplexy. Lancet 2007; 369 499–511.
| Narcolepsy with cataplexy.Crossref | GoogleScholarGoogle Scholar | 17292770PubMed |
[12] Black J, Reaven NL, Funk SE, McGaughey K, Ohayon M, Guilleminault C, et al. The Burden of Narcolepsy Disease (BOND) study: health-care utilization and cost findings. Sleep Med 2014; 15 522–9.
| The Burden of Narcolepsy Disease (BOND) study: health-care utilization and cost findings.Crossref | GoogleScholarGoogle Scholar | 24768358PubMed |
[13] Maski K, Steinhart E, Williams D, Scammell T, Flygare J, McCleary K, et al. Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy. J Clin Sleep Med 2017; 13 419–25.
| Listening to the patient voice in narcolepsy: diagnostic delay, disease burden, and treatment efficacy.Crossref | GoogleScholarGoogle Scholar | 27923434PubMed |
[14] Rosenberg R, Kim AY. The AWAKEN survey: knowledge of narcolepsy among physicians and the general population. Postgrad Med 2014; 126 78–86.
| The AWAKEN survey: knowledge of narcolepsy among physicians and the general population.Crossref | GoogleScholarGoogle Scholar | 24393754PubMed |
[15] Parliament of Australia, editor. Submissions. Inquiry into Sleep Health Awareness in Australia; 2018. Available at https://www.aph.gov.au/Parliamentary_Business/Committees/House/Health_Aged_Care_and_Sport/SleepHealthAwareness/Submissions
[16] Ritchie J, Lewis J, Nicholls CM, Ormston R. Qualitative research practice: a guide for social science students and researchers. Sage; 2013.
[17] Srivastava A, Thomson SB. Framework analysis: a qualitative methodology for applied policy research. J Admin Gov 2009; 4 72–9. Available at https://ssrn.com/abstract=2760705
[18] Ritchie J, Spencer L. Chapter 9: Qualitative data analysis for applied policy research. In: Analyzing Qualitative Data. Bryman A, Burgess R, eds. Routledge; 1994. pp. 173–94. Available at https://doi.org/10.4324/9780203413081
[19] Bowen GA. Document analysis as a qualitative research method. Qualitative Research Journal 2009; 9 27–40.
| Document analysis as a qualitative research method.Crossref | GoogleScholarGoogle Scholar |
[20] National Organization for Rare Disorders (NORD). Rare Disease Database: Narcolepsy. 2017. Available at https://rarediseases.org/rare-diseases/narcolepsy/
[21] Leviton LC, Melichar L. Balancing stakeholder needs in the evaluation of healthcare quality improvement. BMJ Quality & Safety 2016; 25 803–7.
| Balancing stakeholder needs in the evaluation of healthcare quality improvement.Crossref | GoogleScholarGoogle Scholar |
[22] Epstein RM, Street RL. The values and value of patient-centered care. Annals Family Med 2011; 9 100–3.
| The values and value of patient-centered care.Crossref | GoogleScholarGoogle Scholar |
[23] Bate P, Robert G. Experience-based design: from redesigning the system around the patient to co-designing services with the patient. BMJ Quality & Safety 2006; 15 307–10.
| Experience-based design: from redesigning the system around the patient to co-designing services with the patient.Crossref | GoogleScholarGoogle Scholar |
[24] Field MJ, Lo B, eds. Conflict of interest in medical research, education, and practice. The National Academies Press; 2009. pp. 189–215. Available at https://doi.org/10.17226/12598
[25] Kincaid JP, Fishburne Jr RP, Rogers RL, Chissom BS. Derivation of new readability formulas (automated readability index, fog count and flesch reading ease formula) for navy enlisted personnel. Naval Technical Training Command Millington TN Research Branch; 1975.
[26] Ocloo J, Matthews R. From tokenism to empowerment: progressing patient and public involvement in healthcare improvement. BMJ quality & safety 2016; 25 626–32.
| From tokenism to empowerment: progressing patient and public involvement in healthcare improvement.Crossref | GoogleScholarGoogle Scholar |
[27] Buse K, Mays N, Walt G. Making Health Policy. McGraw-Hill Education; 2012.
[28] Bruck D, Costa A. The natural history of health and symptoms in narcolepsy: a to-year longitudinal study. Australian Journal of Primary Health 2003; 9 59–67.
| The natural history of health and symptoms in narcolepsy: a to-year longitudinal study.Crossref | GoogleScholarGoogle Scholar |
