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A vital exercise in accountability

Common sense appears to have prevailed at the Scottish Medicines Consortium (SMC) after the body clumsily attempted to undermine a Scottish Government-backed commitment to transparency.

One year ago, the New Medicines Review, commissioned by ministers, recommended that the SMC meet in public so that discussions about when and how to approve new treatments on the NHS could be opened up and patient groups could see how their contributions were taken into account.

When it met in the open for the first time yesterday, the SMC sought to argue that comments made at the meeting, and those who made them, should not be reported. Preventing the dissemination of the meeting's proceedings would have made a mockery of the suggestion that these were to be public meetings. Fortunately, the SMC relented.

This is not just about the rights of the media to report events (although this is a vital part of the democratic process) but also about recognising that representatives of patient groups and other members of the public are just that: representatives whose role includes reporting back to other interested parties who cannot attend.

That is particularly the case where a meeting is making decisions about medicines for the treatment of patients affected by chronic diseases, or the advanced stages of terminal illness, whose ability to attend may very well be compromised. The SMC lifted the restrictions and says it will amend the guidance. It conceded: "It is impossible and inappropriate for us to tell attendees not to quote directly from the meeting." This is in line with the Scottish Government's intentions. Ministers want the often fraught process of approving new medicines to be more open and to involve patients more. Health Secretary Alex Neil has argued that decisions should be taken by the patients involved and the clinicians who treat them.

In principle, this is correct. However, the Scottish Government's new medicines fund notwithstanding, it must be acknowledged that these are, by their nature, discussions about priorities. It cannot be that the patients who shout loudest or understand the system best are those who gain most from access to new medicines.

It must be understood that the approval of expensive new treatments for high-profile conditions, however desirable, might also come at the cost of less glamorous yet equally life-saving treatments for less prominent conditions.

For example, an expensive new drug that prolongs by a few months the length of time a cancer sufferer has with their children might limit the NHS's ability to deliver equally life-preserving treatment for many more people with chronic respiratory diseases.

The more widely proceedings of the SMC and other such bodies are distributed, the greater the likelihood there must be that more marginalised or isolated patient groups will have a say in such complex decisions. That is why it is to everyone's benefit that these proceedings are in public, accountable and reportable.

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Health

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