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

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I was assisted by a data analysis software system produced by QSR International Ltd named NVivo 8 to capture, organise, code and interrogate the five data sets. This programme helped me to organise and manage thousands of pieces of information from the component sources. These were research materials such as transcripts from interviews, hand written journal entries, emails, notes made at meetings, media reports, official documents, unofficial documents and court proceedings. The NVivo 8 programme refers to a technical term “nodes” as synonymous with the term “codes” (Lavery, 2009a). Before beginning to manage material from the five data sources into NVivo 8 nodes, I selected what I thought were suitable nodes and wrote a short description of each node based on my pre- reading. This clarified for me where the data ought to be placed and where material from the research was best placed. I made decisions about which nodes to code the text into, based on my understanding of the material and the relational words or references to topics in the text. It is common for text to relate to more than one node and therefore judgment is required to allocate the pieces of text to the most appropriate node or to several nodes. I was fortunate to be the only participant on a two-day “Introduction to NVivo 8 Extending Analyses” course run by the firm Academic Consulting Ltd. I was able to begin coding my data with an NVivo expert at my side checking my coding technique into the selected nodes. After the first day, the data which had been entered into the nodes were checked for credibility and categorisation and discussed. This was a helpful exercise and set up clear patterns of coding using the software. There were two types of nodes used in the coding: free nodes and tree nodes. Free nodes were stand-alone nodes for which there was a clear and logical connection between the data and the node. These nodes did not easily fit into a hierarchy of ideas that connect or were dependant on other ideas. Free nodes do not have a structure and are organised in an alphabetical list (Lavery, 2009b). As opposed to free nodes, tree nodes were organised in a hierarchical structure moving from a general category at the top of the node, named a parent node, to a more specific category named child nodes or even to more specific categories yet called grandchild nodes (Lavery, 2009b). 100
The following tables outline the nodes I used to code the data sources. Table 2: Free Nodes Used in NVivo Coding System Free Node Description of Information Contained in the Node A Patient Story Stories or references to an individual person/patient and their circumstances Advocacy An organisation or person advocating for individuals or groups of patients Affordability Decisions to fund or not to fund based on the availability of funding Amartya Sen References to philosopher / economist Amartya Sen or material about capability to achieve fairness and political realism. Community Health Interests References to wider health interests other than an individual person. Opposite to personal health interests. Complaints re Community Exceptional Circumstances The nature of complaints and the process for dealing with complaints Consultation Consultation with the public or medical professions by PHARMAC or government agencies on exceptional circumstances Cost-Effectiveness Relating to decisions made on the basis of cost and patient outcome Cost-Utility Analysis (CUA) Material about the CUA process, outcomes and method of analysis. Decision making Material about how decisions were made and what participants thought of such processes DHBs All references to DHBs including funding and internal processes EC Before PHARMAC Material which referred to the time when the Ministry of Health administered Community Exceptional Circumstances policy Exceptional Circumstances References to the three types of exceptional circumstances; Community EC, Hospital EC and Cancer EC. Exceptional Circumstances Panel or Committee Material which related to the panels and committees which met to consider Community Exceptional Circumstances claims or other related matters Expensive Treatment Material related to high cost treatment Functions of PHARMAC The policies and procedures of PHARMAC and comments and material about the functions of the agency Great Quotes Quotes which stood out in my mind which I wanted to consider using in the text to illustrate the themes Herceptin Material related to the funding and decisions made about Herceptin Individual Health Interests References to health interests of an individual person other than the wider interests of the community. Immanuel Kant References to Immanuel Kant, material about the common good, references to utilitarian decisions and greatest good –greatest number type references. Legislation References to various Acts of Parliament particularly the New Zealand Public Health and Disability Act 2000 Litigation Against PHARMAC References to court cases or legal actions which involved PHARMAC Media Media references to PHARMAC or material in the interviews about the actions of the media in relation to Community Exceptional Circumstances policy. 101
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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
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
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Page 73 and 74: example of well off and powerful pe
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Page 77 and 78: among individuals and communities.
Page 79 and 80: needs. This was because distinguish
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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 and 110: The flow of discussion in the inter
Page 111 and 112: that the disclosure is commercially
Page 113: 6. Producing the report The final o
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
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Page 151 and 152: confirmation that the DHB hospital
Page 153 and 154: the eight women involved in this ca
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Page 157 and 158: Judge’s Concluding Remarks The fi
Page 159 and 160: A Selection of the Media Stories Ca
Page 161 and 162: Case 4: “Worn out by endless figh
Page 163 and 164: 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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