Sampling and data collection

The data collection involved qualitative semi-structured interviews. Since the study addressed networks and actors, it seemed appropriate and reasonable to draw a sample from those actors within the network. Official documentation on the appraisal (reports, press releases etc.) published by NICE and other stakeholder group was used to identify people who could be interviewed. There were not many reasons given for non-participation apart from an email informing that it has been decided that one specific person, a member of the NICE AC, would do the interview on behalf of all the NICE AC members who were invited. There were some who initially accepted but, after the reply that the NICE AC person would do it, they didn‟t want to participate. In a few cases where stakeholders had a spokesperson for the specific appraisal, that person was contacted while a few people were also invited from the NICE AC; apart from the executives, there were members of the technical and other support teams who were asked to participate.

The number of people invited to participate in the research was defined by the number of participants in the appraisal and the participants added to the map (by the respondents); the ratio was, therefore, one person for every actor. A list of candidates and their profile was made, since it was important for the research to have people with different professional backgrounds. After presenting the candidates‟ list to the supervisors, a list of 35 people was

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made in total, in order to deal with the issue of non-response rates. Initially, twenty-five people were invited to participate in the study. Nine people responded positively (apart from the pilot study interviewees), of whom eight were available for interview: one person cancelled due to sickness. The respondents were two members of the NICE AC committee, one person representing the DoH, one person representing a patient organisation, three academics, a member of the academic review teams working with NICE and a health professional-neurologist.

The explanation for the poor response is that the NICE AC leadership would allow only one person to be interviewed because of the issue being in the press and the strong reactions by involved parties. There was also no reply from the pharmaceutical industry, and most people simply emailed the researcher back stating that the NICE AC person would be the only person interviewed regarding the issue. However, of the two people from the AC who were interviewed eventually, one later resigned from the Committee. The critical press comments regarding NICE may well have influenced people who were reluctant to talk about the beta- interferon appraisal. It is worth mentioning here Mason‟s warning (1998) that the qualitative researcher is often seen as a journalist and people get suspicious of what might come out. At the time of the interviews, the appraisal of beta interferon had been completed but there was still tension, which made people more cautious. Respondents‟ views were, probably, different from what they would have been if the decision had not been finalised. Although during the interviews, respondents were positive about the process of economic and clinical evaluation, they expressed disappointment and, in some cases, bitterness regarding the way in which their work was overturned by politicians. There was general disappointment regarding the intervention of politicians the decision was based on evidence, and the loss of credibility of

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the process itself and of the role of NICE. The case of beta-interferon appraisal by NICE had influenced the entire network according to the data.

During the interview with the NICE AC member, who had notified others initially that he would do the interview on behalf of all AC members, there was a change. Questions were asked about the rationale and approach of the research regarding the role of NICE as well as its progress. The low response rate was also discussed and there was an offer of help to identify more people to interview. The NICE AC interviewee suggested one more person, the DoH representative another person and the patient organisation respondent recommended three more people. Therefore, five more people were contacted. In total, eight people were contacted the second time and were invited to be interviewed; apart from the suggested five, three more people were contacted: one member of the press, one patient organisation rep and one academic. But unfortunately they did not agree to participate to the research. From those that replied, one of the candidates had been on maternity leave and another had gone abroad, whilst there was no reply from the other six candidates contacted.

In the meantime, nobody from the group of manufacturers or the Association of the British Pharmaceutical Industries had agreed to be interviewed. In one case, the pharmaceutical industry representative interviewed during the pilot study expressed their desire to help and contacted some of the manufacturers‟ representatives regarding the interview but the answer remained negative. The four pharmaceutical companies and the ABPI also gave a negative response. Three of the companies were sent the questions first and then declined to participate. It should also be noted that the completion of the appraisal and its negative publicity influenced the attempt to get more interviewees and additional data. In the following table, the numerical data regarding the interviews are summarised.

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Table 4.4: Interviewees: arithmetical data

Categories/ Invitations Candidates Invited Responded positively Responded negatively Did not reply Final number of interviewees 1st _{25 9 14 2 8} 2nd 8 22 - 6 0 Total 33 11 14 8 8

Of the eight interviewees, two were women and six men. The intervention of NICE caused great difficulties in obtaining a more substantial number of interviewees. However, this development and also the fact that pharmaceutical industry respondents were not willing to complete the interview were indications of the study‟s sensitivity. Other methods to collect data were discussed such as observations i.e. attend the NICE AC meetings, but this was not allowed and there was no funding to cover travel expenses. However, the minutes from the meetings of the NICE AC were available on the NICE website.

Before inviting the candidates to interview, the necessary permission/ ethics approval (MREC/03/6/34) was received by the South West Multi-centre Research Ethics Committee. The interviewees and the researcher all signed a consent form confirming the confidentiality of the interview whilst interviewees were also handed a copy of the research protocol.