Tighter controls are needed to root out bogus patient groups
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《英国医生杂志》
Patient organisations need to be more tightly regulated to protect the public from bogus groups and undue influence from the pharmaceutical industry and other funding bodies, MPs heard last week.
Setting standards on transparency and accountability would help to distinguish legitimate patient groups from those set up by drug companies to promote awareness of a specific condition and drugs to treat it, said witnesses at the fourth public hearing of the health committee抯 inquiry into the influence of the pharmaceutical industry.
There are more than 200 national patient groups in the United Kingdom and many rely on funding from the pharmaceutical industry, especially if they are concerned with less emotional and more mundane matters which do not attract the public gaze, said Melinda Letts, chair of the committee of medicines working group on patient information.
"The answer is not to ban funding from the pharmaceutical industry but to develop guidelines for what types of funding patient groups should accept. There should also be training for patient groups about how to handle their relationship with the pharmaceutical industry and standards to ensure they have independent governance, editorial control, and that they ban promotion of all products," she told the committee.
Funding from any source, whether from government, charitable bodies, or drug companies, has strings attached, said MP Paul Flynn. Setting clear standards about declaring all sources of funding in annual reports would increase transparency and credibility, he said.
"Knowing that they can抰 advertise to the public, pharmaceutical companies use patient organisations to put their case," said Mr Flynn.
Although patient groups with an income of more than ?0000 ($18934; �14258) a year are required to submit accounts to the Charity Commission, they are not required to publish the names of all donors and how much they have contributed.
In written evidence to the committee, Mr Flynn wrote, "While on the surface this relationship appears to be 憌in-win?for both parties, the power undoubtedly lies with the pharmaceutical companies, who according to the Association of the British Pharmaceutical Industry (ABPI), are worth almost as much as North Sea oil to the UK economy."
Ms Lett insisted that it is possible to set clear objectives and resist pressure from funding bodies to follow their agenda: "If you have the courage of your convictions and explicit about what you want, it is possible to have grants renewed."
As well as recommending guidelines for patient groups in their report, which is due to be published in the spring, Mr Flynn urged the committee to propose that patient groups forge stronger links with the drug regulatory body, the Medicines and Healthcare Products Regulatory Agency (MHRA).
"Patient organisations often are aware of problems from their users 10 to 15 years before drug regulators. The MHRA should hear what patient organisations have to say and give them money to conduct a survey to lift the lid on the problems of treatments," he said.(London Zosia Kmietowicz)
Setting standards on transparency and accountability would help to distinguish legitimate patient groups from those set up by drug companies to promote awareness of a specific condition and drugs to treat it, said witnesses at the fourth public hearing of the health committee抯 inquiry into the influence of the pharmaceutical industry.
There are more than 200 national patient groups in the United Kingdom and many rely on funding from the pharmaceutical industry, especially if they are concerned with less emotional and more mundane matters which do not attract the public gaze, said Melinda Letts, chair of the committee of medicines working group on patient information.
"The answer is not to ban funding from the pharmaceutical industry but to develop guidelines for what types of funding patient groups should accept. There should also be training for patient groups about how to handle their relationship with the pharmaceutical industry and standards to ensure they have independent governance, editorial control, and that they ban promotion of all products," she told the committee.
Funding from any source, whether from government, charitable bodies, or drug companies, has strings attached, said MP Paul Flynn. Setting clear standards about declaring all sources of funding in annual reports would increase transparency and credibility, he said.
"Knowing that they can抰 advertise to the public, pharmaceutical companies use patient organisations to put their case," said Mr Flynn.
Although patient groups with an income of more than ?0
In written evidence to the committee, Mr Flynn wrote, "While on the surface this relationship appears to be 憌in-win?for both parties, the power undoubtedly lies with the pharmaceutical companies, who according to the Association of the British Pharmaceutical Industry (ABPI), are worth almost as much as North Sea oil to the UK economy."
Ms Lett insisted that it is possible to set clear objectives and resist pressure from funding bodies to follow their agenda: "If you have the courage of your convictions and explicit about what you want, it is possible to have grants renewed."
As well as recommending guidelines for patient groups in their report, which is due to be published in the spring, Mr Flynn urged the committee to propose that patient groups forge stronger links with the drug regulatory body, the Medicines and Healthcare Products Regulatory Agency (MHRA).
"Patient organisations often are aware of problems from their users 10 to 15 years before drug regulators. The MHRA should hear what patient organisations have to say and give them money to conduct a survey to lift the lid on the problems of treatments," he said.(London Zosia Kmietowicz)