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

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Interviewees were asked to email back corrections in ‘Track Changes’. One interviewee did not return the transcription at all. After several emails asking the interviewee for any changes, the transcription was not returned. It was clear from my correspondence that the interviewee was happy with the transcription and no changes were made. Apart from the one interviewee discussed above, all other interviewees made some changes to the transcriptions. Some were simply one or two words. Other interviewees asked for a sentence or two to be removed or modified. Some interviewees added to the text of the interview with afterthoughts. One interviewee asked for entire paragraphs to be removed from the transcription which equated to approximately 25% of the transcription. This request was made because the interviewee had made statements at the time of the interview but later when the material was written down wished to retract the statements. Requests under the Official information Act 1982 The public’s access to documents which are held by Crown Agencies such as PHARMAC is determined by the OIA. This Act entitles members of the public to make requests for official information under certain conditions and the government officials must respond to them. I obtained a large amount of official information about PHARMAC using the OIA process. The principle of availability of public documents is well embedded and understood by New Zealand public officials. Researchers of the OIA have stated that material has been released which would never have been released before the OIA came into existence in 1982 (White, 2007). However, not all material is discoverable under the OIA and there are several grounds on which officials are allowed to refuse to release official information. The grounds for refusing to release information are: that the privacy of an individual person will be breached by the disclosure; that national security will be breached by the disclosure; 96
that the disclosure is commercially sensitive and release is likely to cause pecuniary loss; or that the disclosure will prevent officials from giving Government Ministers free and frank advice. In the initial stages of an OIA request, officials must make a preliminary response within 10 working days. The initial response outlines the expected timeline for meeting the request and any other information about the request which is relevant. The final response to the OIA includes a letter describing the information which has been released and the released material. These reply letters were signed by the Minister responsible for the department or agency from where the information was released. The MidCentral DHB Board Secretary responded on behalf of the DHB. The material was delivered either by post or provided electronically through email. I made six OIA requests seeking official information about PHARMAC’s Community Exceptional Circumstances policy. Three requests were made to PHARMAC, one to the Ministry of Health, one to the Department of Prime Minister and Cabinet (DPMC) and one to the MidCentral DHB. In these requests I asked for policy documents, ministerial briefings and cabinet papers, copies of letters, reports, notes and emails which have been written about various aspects of the policy. All the requests were responded to within the provisions and requirements of the OIA. An example of an OIA request to the PHARMAC is provided in Appendix 5 and the response from PHARMAC is provided as Appendix 6. Four requests produced many documents; however two requests did not produce any documents. Some documents were withheld and many were partly withheld. Documents were not available on some of the requested subjects because officials had not committed to writing material on those subjects. Notwithstanding the material which was withheld, large amounts of data were still collected by this method. The request which was made to the DPMC was responded to by acknowledging the request and advising that no documents which I had requested were held in 97
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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
Page 59 and 60: Other results showed that 81% of th
Page 61 and 62: may be grounds for litigation. Henc
Page 63 and 64: determine if decisions on the appli
Page 65 and 66: Chapter 4: Philosophical Framework
Page 67 and 68: extra person with a good or service
Page 69 and 70: just actions by individuals. The th
Page 71 and 72: among the members of the society, a
Page 73 and 74: example of well off and powerful pe
Page 75 and 76: necessarily much advantaged over a
Page 77 and 78: among individuals and communities.
Page 79 and 80: needs. This was because distinguish
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Page 85 and 86: parents refusing treatment for thei
Page 87 and 88: The first two test-questions covere
Page 89 and 90: There was no clarity provided by th
Page 91 and 92: good may be served by their not rec
Page 93 and 94: Evans (2003) ranked the various typ
Page 95 and 96: The Use of the Test-Questions in Th
Page 97 and 98: Qualitative research methods were d
Page 99 and 100: equirements and considerable politi
Page 101 and 102: material and by working through the
Page 103 and 104: and printed copies of Hansard are a
Page 105 and 106: PHARMAC was criticised in 16 of the
Page 107 and 108: I tried to find an interviewee from
Page 109: The flow of discussion in the inter
Page 113 and 114: 6. Producing the report The final o
Page 115 and 116: The following tables outline the no
Page 117 and 118: Table 3: Tree Nodes Used in NVivo A
Page 119 and 120: At this point, I stopped using NViv
Page 121 and 122: Chapter 6: Research Findings Introd
Page 123 and 124: DHBs were given the role of funding
Page 125 and 126: These measures were in response to
Page 127 and 128: Table 5: The Submitters to the Heal
Page 129 and 130: towards New Zealand and for them to
Page 131 and 132: monopolies as such. In their opinio
Page 133 and 134: for the delivery of such services (
Page 135 and 136: NCWNZ that S42(a) of the Bill, requ
Page 137 and 138: contentious among Maori Iwi. Any Ma
Page 139 and 140: Dugdale further advised that if non
Page 141 and 142: cumbersome and recommended that PHA
Page 143 and 144: following text, I have individually
Page 145 and 146: Herceptin. The plaintiffs forwarded
Page 147 and 148: the treatment of cancer in the DHB
Page 149 and 150: eligible people in New Zealand and
Page 151 and 152: confirmation that the DHB hospital
Page 153 and 154: the eight women involved in this ca
Page 155 and 156: the plaintiffs adequate opportunity
Page 157 and 158: Judge’s Concluding Remarks The fi
Page 159 and 160: 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
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Theme 1. Theme 2. Theme 3. Theme 4.
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Chapter 7: Discussion Introduction
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the intellectual property to recove
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The use of QALY’s was tested in t
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Test-Question 2 “Is this distribu
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claimants (and unsuccessful drug co
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(2011-2012) in an open and transpar
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The cost-utility analysis system ha
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Another form of decision making use
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discuss how (or if) PHARMAC meets t
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Test-question 4 also raises the pro
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when there is no profound evidence
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for example value for money, equity
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Community Exceptional Circumstances
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Interferon available to a limited n
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challenges are multiple: to identif
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The data from the research showed h
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PHARMAC could be more open about st
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Chapter 8: Conclusions Introduction
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Limitations to the Research The ite
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There is no one set of indefeasible
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to alcohol and drug treatment or th
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well placed to lead further researc
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utilitarian principles of attemptin
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stand up to the same rigorous clini
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Appendices: Appendix 1: Ethics Appr
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Appendix 2: Key Informant Participa
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Appendix 3: Key Informant Consent F
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Appendix 4: Sample Interview Questi
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Appendix 5: OIA Request Greg Coyle
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Appendix 6: OIA Response from PHARM
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Appendix 7: Community Exceptional C
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Appendix 8: Community Exceptional C
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Ashton, T., & St John, S. (2008). N
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Cohen, G. A. (2008). Rescuing Justi
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Dew, K., Cumming, J., McLeod, D., M
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Glubb, N. (2011). Official Informat
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Holt, S., Harwood, M., Aldington, S
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Lindblom, C. E. (1959). The Science
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http://www.moh.govt.nz/moh.nsf/ea60
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Cash Flows (Ed.), Government of New
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PB/132 National Council of Women of
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Romano, C. (2009). Amartya Sen Shak
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Swedish Parliamentary Priorities Co
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