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Campaigning for transparency
Leading Edge
Campaigning for transparency On Oct 19, 2007, a campaign called Cancer United was launched in Brussels, Belgium, to bring together key stakeholders to tackle inequalities in cancer care across Europe. Their aim was seemingly a laudable one. However, many people have questioned the validity and impartiality of the campaign after the disclosure that the pharmaceutical company Roche was the sole financial supporter and that an affiliated public relations company was acting as secretariat. Moreover, campaign organisers were not transparent about the source of their funding when inviting leading cancer experts, European politicians, and businessmen to support them—support that was essential if the campaign were to appear credible. Some supporters quickly withdrew their endorsement when they realised the potential conflicting interests and that their integrity might be compromised. Indeed, even after the issue has been drawn to the attention of campaign organisers, a detailed funding statement is still not present on the Cancer United website. Cancer campaigns must be transparent about the support they receive if they are to be effective in raising awareness and prompting improvements in treatment and diagnosis. Epidemiological studies from the EUROCARE group have heightened public awareness about large inequalities that exist across Europe in cancer care and survival, and recent updates of these studies suggest there is still much work to be done if survival is to increase to comparable levels among the various member states of the European Union. Campaigns such as Cancer United are therefore much needed. So what was the problem? Roche manufactures trastuzumab and bevacizumab, drugs that have received substantial media attention because of perceived inequalities in access. The company, therefore, has a clear vested interest in lending its support to this group, and this vested interest should have been made clear from the outset of the campaign. However, Cancer United’s woes are not unique. Campaigns from some patient groups have also come under fire: astroturfing, the disguise of an orchestrated marketing campaign as a spontaneous outburst of public opinion has been used to describe some of these groups’ activities. If these patient-led campaigns are to have a truly transparent voice, the financial support they receive must be made clear to interested parties. Most campaigns are targeted at the general public via the media in the hope that groundswell opinion will change policy at http://oncology.thelancet.com Vol 7 December 2006
an appropriate level, both locally and nationally, and not only raise awareness but also increase available funds. Collaborators will be motivated to join campaigns to meet their own interests, but any collaboration between groups must be balanced so that no one agenda or opinion is seen to prevail and patients’ needs are not overlooked. Collaborations between different stakeholders, in both the public and private sector, are needed to make progress in funding and access to treatments for cancer. For example, Cancer Research UK has formed the Cancer Campaigning Group (CCG), a coalition of more than 30 UK cancer charities, to raise awareness of important issues around cancer and gain improvements in prevention, treatment, patient involvement and choice, and research. This coalition is funded by pharmaceutical companies, but unlike Cancer United, the CCG website describes the involvement of the five supporting companies and the role these organisations play within the CCG: “The steering group meets with representatives of supporter companies twice yearly to update them on recent and forthcoming activities. Supporting organisations do not direct or control CCG strategy, activities, or literature”. Unfortunately, the financial commitment by each company is not detailed. Disclosure of involvement, financial or structural, is important because interested parties can then judge the aims of a campaign in the context of any potential conflicts and assess the input and influence of supporting organisations. Indeed, such disclosures are required from speakers at annual meetings of some professional societies to ensure that any potential biases are fully apparent and to allow the audience to make an informed decision on the validity and impartiality of the material presented. This approach could be a logical and valuable policy for campaigning groups to adopt. Although most organisations will use campaigns to further their own agenda, common sense should be used when structuring campaigns so that their aims are not undermined, ridiculed, or simply forgotten amid the controversy. Naivety can no longer be a defence, questions should be asked by participants of campaigning groups so that resources are used most effectively and are seen to be given without hidden motives. Detailed conflict of interest statements are now mandatory for most professional endeavours. Surely these should also be provided by campaigning groups? ■ The Lancet Oncology
http://www.cancercampaigning group.org.uk/
http://www.cancerunited.org/
961
Campaigning for transparency On Oct 19, 2007, a campaign called Cancer United was launched in Brussels, Belgium, to bring together key stakeholders to tackle inequalities in cancer care across Europe. Their aim was seemingly a laudable one. However, many people have questioned the validity and impartiality of the campaign after the disclosure that the pharmaceutical company Roche was the sole financial supporter and that an affiliated public relations company was acting as secretariat. Moreover, campaign organisers were not transparent about the source of their funding when inviting leading cancer experts, European politicians, and businessmen to support them—support that was essential if the campaign were to appear credible. Some supporters quickly withdrew their endorsement when they realised the potential conflicting interests and that their integrity might be compromised. Indeed, even after the issue has been drawn to the attention of campaign organisers, a detailed funding statement is still not present on the Cancer United website. Cancer campaigns must be transparent about the support they receive if they are to be effective in raising awareness and prompting improvements in treatment and diagnosis. Epidemiological studies from the EUROCARE group have heightened public awareness about large inequalities that exist across Europe in cancer care and survival, and recent updates of these studies suggest there is still much work to be done if survival is to increase to comparable levels among the various member states of the European Union. Campaigns such as Cancer United are therefore much needed. So what was the problem? Roche manufactures trastuzumab and bevacizumab, drugs that have received substantial media attention because of perceived inequalities in access. The company, therefore, has a clear vested interest in lending its support to this group, and this vested interest should have been made clear from the outset of the campaign. However, Cancer United’s woes are not unique. Campaigns from some patient groups have also come under fire: astroturfing, the disguise of an orchestrated marketing campaign as a spontaneous outburst of public opinion has been used to describe some of these groups’ activities. If these patient-led campaigns are to have a truly transparent voice, the financial support they receive must be made clear to interested parties. Most campaigns are targeted at the general public via the media in the hope that groundswell opinion will change policy at http://oncology.thelancet.com Vol 7 December 2006
an appropriate level, both locally and nationally, and not only raise awareness but also increase available funds. Collaborators will be motivated to join campaigns to meet their own interests, but any collaboration between groups must be balanced so that no one agenda or opinion is seen to prevail and patients’ needs are not overlooked. Collaborations between different stakeholders, in both the public and private sector, are needed to make progress in funding and access to treatments for cancer. For example, Cancer Research UK has formed the Cancer Campaigning Group (CCG), a coalition of more than 30 UK cancer charities, to raise awareness of important issues around cancer and gain improvements in prevention, treatment, patient involvement and choice, and research. This coalition is funded by pharmaceutical companies, but unlike Cancer United, the CCG website describes the involvement of the five supporting companies and the role these organisations play within the CCG: “The steering group meets with representatives of supporter companies twice yearly to update them on recent and forthcoming activities. Supporting organisations do not direct or control CCG strategy, activities, or literature”. Unfortunately, the financial commitment by each company is not detailed. Disclosure of involvement, financial or structural, is important because interested parties can then judge the aims of a campaign in the context of any potential conflicts and assess the input and influence of supporting organisations. Indeed, such disclosures are required from speakers at annual meetings of some professional societies to ensure that any potential biases are fully apparent and to allow the audience to make an informed decision on the validity and impartiality of the material presented. This approach could be a logical and valuable policy for campaigning groups to adopt. Although most organisations will use campaigns to further their own agenda, common sense should be used when structuring campaigns so that their aims are not undermined, ridiculed, or simply forgotten amid the controversy. Naivety can no longer be a defence, questions should be asked by participants of campaigning groups so that resources are used most effectively and are seen to be given without hidden motives. Detailed conflict of interest statements are now mandatory for most professional endeavours. Surely these should also be provided by campaigning groups? ■ The Lancet Oncology
http://www.cancercampaigning group.org.uk/
http://www.cancerunited.org/
961