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

Exceptional Circumstances subsidy. I spoke with each potential interviewee
about the possibility of an interview. I found that their experiences were quite
removed from the operation of the policy because the process was handled by
their doctors. All they could tell me was that they had been denied their
applications and did not know why. This outcome is also discussed in the
Discussion (Chapter 7) of this thesis.
Consequently, I decided not to interview patients but instead to interview the
executive officers of two patient advocacy organisations. These individuals had
assisted many patients in the process of making Community Exceptional
Circumstances claims and were recognised 20 as having a great knowledge of
the process. I interviewed the executive officers of the New Zealand AIDS
Foundation 21 (NZAF) and the New Zealand Organisation for Rare Diseases 22
(NZORD).
All the interviewees were alerted that the interview would be for approximately
one hour, conducted face-to-face and recorded. Each prospective interviewee
was sent a letter asking them to consider participation. The information sheet
approved by the AUTEC outlined the purpose of my research and a list of
questions to be used in the interview.
The prospective key informants were asked to send the consent forms back to
me signed in a self-addressed envelope if they agreed to participate in the
interview. One interviewee agreed to be interviewed but did not sign a consent
form. This person stated that, as far as he was concerned simply his giving the
interview was consent enough. I considered this was adequate and I recorded
this as verbal consent on the tape.
Each interviewee had a different background and experience of the PHARMAC
policy. For this reason, I sent each interviewee different sets of questions
relating to their area of expertise. The questions were used as a guide or
prompt to discussion and were not rigidly adhered to. No deception was used
in the enrolment of the interviewees or during the interviews.
20 The NZAF and NZORD representatives were suggested as potential interviewees by a senior PHARMAC Manager as
people who they had dealt with on many occasions relating to Community Exceptional Circumstances claims.
21 The New Zealand AIDS Foundation website is http://www.nzaf.org.nz/
22 The New Zealand Organisation for Rare Diseases website is http://www.nzord.org.nz/home
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