How does the operation of PHARMAC's 'Community Exceptional ...

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It is a condition of approval that AUTEC is notified of any adverse events or if the research does not commence. AUTEC approval needs to be sought for any alteration to the research, including any alteration of or addition to any documents that are provided to participants. You are reminded that, as applicant, you are responsible for ensuring that research undertaken under this approval occurs within the parameters outlined in the approved application. Please note that AUTEC grants ethical approval only. If you require management approval from an institution or organisation for your research, then you will need to make the arrangements necessary to obtain this. When communicating with us about this application, we ask that you use the application number and study title to enable us to provide you with prompt service. Should you have any further enquiries regarding this matter, you are welcome to contact Charles Grinter, Ethics Coordinator, by email at charles.grinter@aut.ac.nz or by telephone on 921 9999 at extension 8860. On behalf of the AUTEC and myself, I wish you success with your research and look forward to reading about it in your reports. Yours sincerely Madeline Banda Executive Secretary Auckland University of Technology Ethics Committee Cc: Greg Coylegreg.coyle@tec.govt.nz 266
Appendix 2: Key Informant Participant Information Sheet 28 April 2010 Research into how PHARMAC’s ‘Community Exceptional Circumstances’ policy is applied. My name is Greg Coyle and I am an Auckland University of Technology PhD student. I am writing to you to ask you if you would be prepared to take part in a research project I am conducting as part of my PhD study. The topic of the research is an examination of how the PHARMAC policy of ‘Community Exceptional Circumstances’ has worked for individual citizens and the community in New Zealand. I am asking you to contribute to this study because you have has experience of this PHARMAC policy and I am asking a variety of people to give there perspectives from their experience. I plan to talk to PHARMAC managers, politicians, members of the pharmaceutical industry, and members of the medical profession, academics and patient advocate groups who have all experienced the policy in some way or another. I am also conducting a media study of some stories about Community Exceptional Circumstances which have been reported in the New Zealand media. In the case that you would have liked to participate but for one reason or another you cannot participate, I would be grateful if you would suggest an alternate whom I could approach to be interviewed. Your agreement to participate would mean that I would conduct a one hour interview in relation to the PHARMAC policy. This will be a face to face interview which can take place either in your home, office or any other convenient place. The interview will be recorded. This research will benefit future patients who will apply for subsidy for pharmaceutical treatment under the Community Exceptional Circumstances policy by examining the way in which PHARMAC applies this policy and identifying if there are any areas where the policy and application can be improved. Politicians and health administrators will also benefit because my study will highlight the pressures on the individuals who apply for Community Exceptional Circumstances and the pressure on the national pharmaceutical budget. The privacy of all the participants in the study will be protected and the comments made in the interviews will remain anonymous. Should you wish your comments to be attributed to you, this will be done. 267
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How does the operation of PHARMAC
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Applying the Test-Questions .......
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Appendix 9: Analysis of Material Re
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List of Abbreviations ABS Australia
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Attestation of Authorship I hereby
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I gratefully acknowledge Major Camp
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Abstract This thesis explores how g
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Chapter 1: Introduction What is thi
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making? Should a person’s level o
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there is no mathematical calculatio
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health, disability, treatment of ol
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I then moved to the subject of rati
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In Chapter 3, New Zealand’s past
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Chapter 2: Background Introduction
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The following journals have no auto
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Technological and pharmaceutical di
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in every sense, and attenuates the
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waiting time for first (or subseque
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Macro-Level Distributions Macro-lev
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(2000) in a report for the Ministry
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level, too many to discuss here. On
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effectiveness of treatment. However
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surgical treatment for ectopic preg
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In a study conducted by the Commonw
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They claim that health inequities c
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these presentations are correct, th
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waiting list for patient priority.
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care within finite resources. The c
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to pay for this co-operation. In 20
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Other results showed that 81% of th
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may be grounds for litigation. Henc
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determine if decisions on the appli
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Chapter 4: Philosophical Framework
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extra person with a good or service
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just actions by individuals. The th
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among the members of the society, a
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example of well off and powerful pe
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necessarily much advantaged over a
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among individuals and communities.
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needs. This was because distinguish
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systematic and transparent. In her
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why PHARMAC would subsidise unecono
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parents refusing treatment for thei
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The first two test-questions covere
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There was no clarity provided by th
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good may be served by their not rec
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Evans (2003) ranked the various typ
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The Use of the Test-Questions in Th
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Qualitative research methods were d
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equirements and considerable politi
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material and by working through the
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and printed copies of Hansard are a
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PHARMAC was criticised in 16 of the
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I tried to find an interviewee from
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The flow of discussion in the inter
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that the disclosure is commercially
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6. Producing the report The final o
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The following tables outline the no
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Table 3: Tree Nodes Used in NVivo A
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At this point, I stopped using NViv
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Chapter 6: Research Findings Introd
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DHBs were given the role of funding
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These measures were in response to
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Table 5: The Submitters to the Heal
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towards New Zealand and for them to
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monopolies as such. In their opinio
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for the delivery of such services (
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NCWNZ that S42(a) of the Bill, requ
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contentious among Maori Iwi. Any Ma
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Dugdale further advised that if non
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cumbersome and recommended that PHA
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following text, I have individually
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Herceptin. The plaintiffs forwarded
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the treatment of cancer in the DHB
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eligible people in New Zealand and
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confirmation that the DHB hospital
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the eight women involved in this ca
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the plaintiffs adequate opportunity
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Judge’s Concluding Remarks The fi
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A Selection of the Media Stories Ca
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Case 4: “Worn out by endless figh
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Case 6: “PHARMAC scolded for MS-d
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The drug to treat Pompe’s Disease
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The Voice of Patients and Family Me
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Sclerosis Society did this three ti
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was suffering would not pass the ra
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Eight of the twelve persons approac
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Part II: The Key Informant Intervie
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agreed this was done. Secondly, PHA
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the pharmaceutical schedule. The or
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No we have never thought that $3 mi
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Insights were given as to the indep
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and Now some people can say that’
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Q Be a voice for the family? A Yes,
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key issue here. Some clinicians wer
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I deeply suspect that Community Exc
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should be developing the capacity o
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make. And so PHARMAC has been a hug
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and PHARMAC is not above rationing
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This case demonstrated that the cos
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and budget management. It says this
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Q Do you recall the Kaletra issues
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Q Can I ask you about PHARMAC’s c
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….successfully…for things espec
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This was also done for the hard cop
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The Ministry of Health could not lo
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consultation documents which relate
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The following information was recei
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with the application. The discharge
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Again no report was attached from t
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The patient was also prescribed pre
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circumstances described were not su
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treatment was not unusual and the c
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their clinical circumstances would
Page 229 and 230: Theme 1. Theme 2. Theme 3. Theme 4.
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Page 245 and 246: Another form of decision making use
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Page 261 and 262: The data from the research showed h
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Page 265 and 266: Chapter 8: Conclusions Introduction
Page 267 and 268: Limitations to the Research The ite
Page 269 and 270: There is no one set of indefeasible
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Page 279: Appendices: Appendix 1: Ethics Appr
Page 283 and 284: Appendix 3: Key Informant Consent F
Page 285 and 286: Appendix 4: Sample Interview Questi
Page 287 and 288: Appendix 5: OIA Request Greg Coyle
Page 289 and 290: Appendix 6: OIA Response from PHARM
Page 291 and 292: Appendix 7: Community Exceptional C
Page 293 and 294: 279
Page 295 and 296: 281
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Page 299 and 300: Appendix 8: Community Exceptional C
Page 301 and 302: Ashton, T., & St John, S. (2008). N
Page 303 and 304: Cohen, G. A. (2008). Rescuing Justi
Page 305 and 306: Dew, K., Cumming, J., McLeod, D., M
Page 307 and 308: Glubb, N. (2011). Official Informat
Page 309 and 310: Holt, S., Harwood, M., Aldington, S
Page 311 and 312: Lindblom, C. E. (1959). The Science
Page 313 and 314: http://www.moh.govt.nz/moh.nsf/ea60
Page 315 and 316: Cash Flows (Ed.), Government of New
Page 317 and 318: PB/132 National Council of Women of
Page 319 and 320: Romano, C. (2009). Amartya Sen Shak
Page 321 and 322: Swedish Parliamentary Priorities Co
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