Select Committee on Health Minutes of Evidence

Annex B


  Following consultation with this industry and other MS charities this policy was approved by the MS Society Board of Trustees October 1999.


1.  Background

  1.1  The MS Society has relationships with many different sectors of business and industry as a routine part of its work on behalf of people affected by MS. It is often a customer, sometimes a partner or contractor, and also benefits from gifts in cash or in kind. In all these relationships, the Society aims to behave ethically and to the standards expected of a prominent charity; it works within the law.

  1.2  The pharmaceutical and allied industries (referred to as the "Pharma Industry" in this paper) at present constitute the only sector of business with an interest in the same unique group of people for whom the Society works. This policy statement, the result of extensive consultation, sets out the guidelines within which the Society will work. It is intended to:

    —  Assure the Trustees that the Society is operating within the constitution.

    —  Enable the Chief Executive to make decisions as necessary.

    —  Clarify the Society's position to its members, the Industry and the public.

    —  Facilitate clear and unambiguous relationships between the Society and the Pharma Industry.

  1.3  Everyone who works for the Society, whether paid or as a volunteer at national or local level, is expected to observe these guidelines, as is the staff of the Industry. In addition, the Industry is requested to ensure that consultancies and contractors it retains adhere to them.

  1.4  The Pharma Industry is a sector of business with which the Society has only begun to work since the licensing of the first disease-modifying treatments for MS. While it aims to work to the same standards in all circumstances, special attention is required for these relations.

  1.5  In addition to other factors, specific UK and European laws regulate the Industry, while the MS Society operates under charity law. The Industry works under particular constraints over promoting prescription-only medicines to the public, while the Society's constitution emphasises education and information. Both the Industry and the Society accept the law and regulations for licensing and use of pharmaceutical products.

  1.6  The Industry is concerned with the health and well being of people with MS, but is of necessity concerned with selling its products to the NHS and must provide a return to investors. As a charity the Society works solely for the benefit of people affected by MS and no other interest; its independence is central to its work. Linked to this is the Society's public reputation which it safeguards strenuously.

  1.7  The paramount consideration for the Society in its relations with the Pharma Industry will always be the benefit or disadvantage that could result for people affected by MS.

  1.8  These guidelines cover the following areas:

    —  The basis of partnership.

    —  Research, information and publications.

    —  Government, the NHS, the medical and allied professions.

    —  Endorsement and promotion of products and services.

    —  Support of healthcare workers.

    —  Financial and other material support.

2.  The basis of partnership

  2.1  The MS Society values co-operative relationships with the Pharma Industry, to foster effective and accurate communication between people affected by MS and the companies whose decisions will affect their treatment.

  2.2  We consider that partnership is based on openness and integrity. It is expected that the Society and the Industry will each share full and timely information about initiatives that bear on the other. Where this is limited for reasons of individual, legal, commercial or other confidentiality, each will ensure that the other is made aware of this. Any information provided and accepted in confidence will be treated on that basis.

  2.3  The interests of people affected by MS will be best served if the Society and the Industry have a partnership of equals. We recognise that successful partnerships are based on mutual benefit, and consider that each party should make efforts to ensure that it understands goals and internal culture of the other, as well as the external pressures.

  2.4  Serving the interests of people affected by MS often requires the Society and the Industry to work together on policy development and practical initiatives. Neither the Society nor the Industry should assume the other's support without explicit agreement, formal or informal.

  2.5  The MS Society acknowledges the Industry's need to make profits which serve the interests of investors and provide for investment in future treatments. However, the marketing agenda of the Industry is not necessarily the same as that of the charity, and the Society's support for marketing activity should not be taken for granted.

3.  Research, information and publications

  3.1  The Society welcomes information from the Industry of relevance to people affected by MS and to the Society's research or policy programmes. In general the Society prefers to deal with information subjected to peer review and in the public domain.

  3.2  Where the Industry seeks access to the Society's beneficiaries, members or supporters this will be by communication and invitation to participate from the Society; lists are not made available. Each proposal is considered separately and the Society's time and resources are taken into account.

  3.3  The Society aims to ensure that people affected by MS are able to rely on the best available evidence in reaching conclusions about their treatment. It supports systematic, scientific investigation including clinical trials where these will reduce uncertainty, though it does not regard placebo as the only acceptable form of control.

  3.4  The Society is committed by its constitution to seek publication of research on MS. Where the Society is in partnership with the Industry publication of results is always expected, but the Society also encourages the Industry to publish the results of all research.

  3.5  The Society is prepared to enter partnerships with the Industry in research projects, providing support as appropriate; a range of involvement can be considered from advisory to co-funding.

  3.6  In all research involving people affected by MS, investigators are expected to adhere to the canons of ethical and good clinical practice including voluntary informed consent, as well as prevailing law. The Society is a member of the Association of Medical Research Charities and observes its research policies.

  3.7  The Society has an interest in epidemiology and population-based research. Because of its extensive databases, the Society may be able to give particular help with such projects, subject to appropriate safeguards for individuals and their privacy.

  3.8  The Society has particular concern that the interests of people with MS are adequately recognised when they participate as volunteers in clinical trials or other human research projects, and is always prepared to advise the Industry on this.

4.  Government, the NHS, the medical and allied professions

  4.1  The Society and the Industry share the common goal of increasing the resources available for the treatment and management of MS. There are circumstances in which the Society will wish to work with the Industry to influence the policy of government and the NHS, or the attitudes and practices of the professions. Clarity in goals and methods is expected at the outset and at stages during joint work.

  4.2  Where the Society is working with the Industry to influence policy and practice it will always be prepared to disclose this. It will not be acceptable for either partner to obscure the involvement of the other.

  4.3  Media or other public relations initiatives in pursuit of shared goals are likely to impact on the work and standing of the Society or of the Industry. They should therefore be discussed as early as possible within the limits of proper confidentiality, and note taken of any reservations expressed by either party.

5.  Endorsement and promotion of products and services

  5.1  The Society supports the availability of the widest range of treatments, and of informed choice by patients in consultation with their doctors. Treatments may include medicines, complementary and/or alternative therapies, lifestyle changes, surgical or other interventions as well as non-therapeutic products.

  5.2  In line with its general policy, the Society seeks to ensure that its beneficiaries have the most authoritative and balanced information available on which to base their choices. It encourages the Industry to co-operate in making this available.

  5.3  The Society avoids endorsing individual products. Reference in the Society's publications or information services to a particular product by generic or trade name, or acceptance of advertising where permitted, does not constitute approval or recommendation of the product.

6.  Support of healthcare workers

  6.1  The Society is willing to co-fund health professional posts in collaboration with the NHS and/or the Industry, through its MS Nurse Fund or other channels as appropriate. We will not support posts that are part of the marketing strategy of the Industry.

  6.2  To qualify for the Society's support, any post must have an agreed job description that makes clear the benefit expected for people affected by MS. The post holder must be available to the client group agreed and be free from bias in principle and in practice.

7.  Financial and other material support

  7.1  The Society welcomes financial and other material support from the Industry for its work, so long as the Society's charitable status and independence is not compromised. In addition to the effects upon the goals and programme of the Society, the overriding consideration will always be the potential benefit or disadvantage to people affected by MS.

  7.2  When possible, the Society prefers financial support to be provided via consortia of two or more companies. Where associated with a publication or event, the Society will acknowledge support. It will always be prepared to disclose support even where there is no ready vehicle for making this public.

  7.3  The Society recognises the ambivalence of attitudes towards the Industry among NHS workers, policymakers and the medical profession, and regards the risk of adverse publicity as grounds to decline or return donations, grants or other payments.

  7.4  The name, marks and reputation of the MS Society are its property and may only be used by the Industry with the Society's explicit agreement. In no case will it agree to their use in order to give one company market advantage over another.

  7.5  The staff of the Society are subject to strict rules on acceptance of gifts and hospitality. The Industry is asked to ensure that it does not lead staff to break these rules accidentally or intentionally; to do so would lead to a rupture in relations.

  7.6  The Society's national headquarters in Scotland and Northern Ireland, its regions in England and Wales, and its branches and local units throughout the UK should not be approached by any company without the prior approval of the Chief Executive. If direct approaches are received from these units of the Society, the Industry is asked to first clear them with the Chief Executive.

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