Changes in the context of the network

Actors, in order to promote their interests, are constantly modifying their strategies and do not hesitate in challenging the network. Apart from the impact and changes to the network and its actors, there is an impact for patients and the provided healthcare service. The delay in the decision regarding the treatment has worsened some patients‟ conditions and has caused further problems for their carers and, consequently, for their socio-economical environment.

“While the Institute appraises the only drug neurologists believed can stall the disease; patients are deteriorating past the point where they could be helped by B-interferon” (patient organisation, Document analysis).

The publicity received has also affected the broader social environment within which the network operates; the images of a difficult life of an MS patient were powerful and have provoked a lot of discussions about the moral point of the case.

Moreover, the development of a new type of policy could attract more stakeholders and actors that would like to be included in the network and decision-making process.

Naturally, for some actors, further implications might be created that they would have to face, such as budget and implementation issues for the Health Authorities that are expected to respond to the new guidelines.

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differently. This depends on how they have been influenced by the changes.

The way in which actors interpret a decision, such as the beta-interferon appraisal, was significant for the network. In this case study, some actors saw the final outcome as a failure of NICE and others as a success of the industry and the lobbyers. An interesting interpretation has been that people were driven into making the final decision on beta interferon in the line with their ethical considerations and decided to give patients the treatment. The decision making process has thus gained a moral component.

5.8.1 Actors and changes in the network structure

The changes in the structure involved new actors coming and others leaving. In order to keep an influential position in the network, an actor needs to maintain their authority otherwise the whole network remains unstable because of the many changes take place. This is due to the process of changing; for example changes into relationships between actors or changes into the network membership with new actors entering the network or other leaving the network. The final decision/guidance of NICE AC put a burden of responsibility both on policy makers and suppliers (industry).

“I think the clear message which I think it was good for NICE although it felt uncomfortable was having to go back and do it again, or having to accept that its decision was not necessarily right. But from our point of view it is very encouraging to see that the process we set in for challenge worked” (pharmaceutical industry rep).

5.8.2 Changes in the relationships between actors

Changes in actors‟ relationships refer to: the changes towards NICE which has been under a lot of criticism and has been weakened, to the involvement of the media, the lobbying among

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Changes towards NICE:

From the moment that the appraisal received publicity and turned negative, NICE came under attack by other actors who were aiming to overturn the negative decision and promote their interests. Actors did not want to be allies with NICE because they were afraid of being criticised.

“We show ourselves very much as being in the confrontation with NICE from the beginning” (patient organisation respondent).

A severe conflict emerged between NICE and the MS Society instigated by the later .The data show that the MS Society has strongly criticised NICE.

“There was a constant kind of push and pull between the MS Society and the MS Research Trust and again, as with the companies, it wasn‟t clear until very late in the process that we were all pointing in the same direction and were actually going to work in concert rather than working separately” (patient organisation representative)

The debate has gone back to rationing issues and NICE establishment and its mission, all of which has been challenged. The media coverage and the criticism on NICE challenged also the governmental policy and the role of the government towards NICE and towards patient groups. More patients groups and other actors engaged in an exchange of announcements and statements regarding NICE, patient‟s rights and treatments.

“Members and supporters are also urged to keep up the pressure on the Fair Treatment Campaign” (policy officer, document analysis).

The document analysis (editorials 4-10)shows that the publicity the appraisal received united MS patient groups from all around the world and they were campaigning against the negative

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guidance regarding beta-interferon treatment, whilst it also strengthened the relationships between MS and other patients groups.

Other findings that emerged from the research underlined the importance of designing a proper appraisal process and highlighted the contrast among patient groups whose interests were common.

5.8.3 Changes in the relationships between the network and the network context

There were changes to the relationships of NICE with other networks on a national level and more of an impact on the relationship of NICE with international networks because in each country they are applying their own systems.

“NICE was a concern for manufacturers, since other countries might learn what is happening and get influenced….” (academic respondent)

The decision of NICE AC on beta interferon affected not only the network environment, and the relationships of actors in the network, but also the understanding of various issues. Many things changed for all involved in the process, such as patients groups preparing themselves to defend their positions and to look for allies if necessary.

“This politically motivated rationing is dressed up as a clinical evaluation” (Liberal

democrats MP, document analysis).

There were positive and negative comments regarding NICE‟s international profile and NICE had an influential role on other countries. The interaction among actors at an international level brought more information into the network.

“NICE I think has probably blazed a trail for agencies in western-European and North American Australasian countries in being prepared to carry out cost-effectiveness evaluations of medicines” (patient organisation representative).

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A new context has been created within which future issues had to be resolved.

“One of the things that happened with beta-interferon is one of the appeals that they haven‟t appropriately involved patients and I think that better involvement of patients is a consequence of that. They realise they have to get patients involved” (academic).

5. 8.4 Other Impacts on the network

New actors joined the network such as the Decision Support Unit the aim of which was to defend patients‟ rights and substantially change the structure of the network. The decision of NICE on the beta interferon appraisal had been alarming news for other networks, national and international, and there was more pressure coming through the national and international interaction between networks and particular actors. Every actor interpreted the results in a different way.

“The industry now had more responsibilities” pharmaceutical industry respondent).

“NICE looked like a weak link in the chain after the decision” (Nice AC member respondent).

The formation of relationships depends also on the amount of pressure that actors have to face at a particular moment and their potential need for more resources from the point of view of more actors coming in that could facilitate the network members.

“So I think that was one of the pressures, the workload the groups were under at time and it lead to the Decision Support Unit (DSU) (academic).