Select Committee on Health Written Evidence


APPENDIX 13

Memorandum by Long-term Medical Conditions Alliance (PI 36)

INTRODUCTION

  LMCA believes that well conducted, transparent relationships between voluntary health organisations (VHOs) and the pharmaceutical industry can be highly beneficial to patients, and are possible without any compromise of the independence of the VHOs concerned.

  Nevertheless, these relationships are complex and can be challenging. The press and public are rightly concerned that (VHOs) should be free from commercial interest or pressure. This concern is frequently heightened when a VHO is in receipt of financial or other support from industry, and it is right that these relationships be subjected to regular review and scrutiny. Many VHOs have rigorous policies to govern their relations, and keep them under regular review.

  However, the public also needs to be assured and we therefore welcome the Health Select Committee Review of the influence of industry on patients, consumers, the general public and representative bodies, and are pleased to offer evidence to the Committee. Our evidence focuses on two related aspects of the remit of the review: (d) "provision of drug information and promotion" and (e) "professional and patient education".

  We would be willing to provide further written or oral evidence to the Committee.

1.1  About LMCA

  The Long-term Medical Conditions Alliance (LMCA) is the umbrella body for over 115 national voluntary organisations working to meet the needs of people with long-term health conditions. Our vision is of a society in which people with long-term health conditions have control over their lives and can live them to the full.

  As well as seeking to influence health policy in the interests of people living with long term conditions, LMCA provides a range of services to its member organisations. This has included producing guidance on how to develop and maintain appropriate working relationships with pharmaceutical industry, in the form of our report, "Working with the pharmaceutical industry—guidelines for voluntary health organisations on developing a policy" (attached).

  Our evidence draws on our experience in the field of partnership working between the pharmaceutical industry and patient groups/voluntary health organisations, and on the good practice among our member organisations. It outlines:

    (a)  The need for constructive relationships between VHOs and pharmaceutical industry.

    (b)  Issues surrounding industry support for VHOs, particularly in relation to provision of drug information and patient education.

    (c)  Good practice which VHOs have adopted to ensure they are not unduly influenced by industry and how patient groups have been able to influence industry in the interests of patients.

2.  THE NEED FOR CONSTRUCTIVE RELATIONSHIPS BETWEEN VHOS AND PHARMACEUTICAL INDUSTRY

2.1  Promoting the needs of patients

  2.1.1  Long-term conditions such as MS and epilepsy are frequently lifelong and incurable. Many people living with these conditions will need to take drug treatments to manage their condition, often for the rest of their lives. These treatments—and their side effects—can have a profound impact on quality of life, and indeed mortality.

  2.1.2  The decisions and activities of the manufacturers of these treatments have significant consequences for patients, and it is essential that those who develop, manufacture and market such products understand their needs.

  2.1.3  VHOs play a unique and crucial role in representing these needs and views. By developing constructive relationships with the pharmaceutical industry, VHOs report they have been able to exert influence on behalf of patients across a range of issues, from identifying patient-centred outcomes for trials and research to ensure treatment regimes meet the needs of patients, to helping ensure that the information which manufacturers provide on treatments and their side effects is accessible and appropriate to the patients' needs.

  2.1.4  LMCA therefore believes that constructive relationships with pharmaceutical industry are an important mechanisms for VHOs to ensure that the needs of their patients are heard and acted upon.

2.2  Meeting patients' information and education needs

  2.2.1  People with long term conditions can face a bewildering array of treatment options. Access to high quality, accurate information on treatments, side effects and alternatives, is key in enabling patients to take control of their condition and play a full and effective role in their own care.

  2.2.2  Despite the plethora of health information in newspapers, magazines and TV, people with long-term conditions still report difficulty in finding the information they need. They also tell us that "more and better quality information" would make a significant difference to their lives). (This view is endorsed by the finding that almost 90% of respondents to the government's choice consultation in autumn 2003 wanted more information to make decisions and choices about their treatment or care.)

  2.2.3  Manufacturers of medicines are required to provide information, and indeed research by the National Asthma Panel revealed that patients are keen to receive more information from manufacturers.[20] By maintaining dialogue, and advising where appropriate, VHOs have helped ensure that the manufacturers provide the right information to enable patients to understand their treatments and to use them to gain maximum benefit.

  2.2.4  However, VHOs themselves are among the most trusted sources of information services for patients19 and have a wealth of experience in developing clear, accessible, unbiased information on treatments and services. Increasingly, pharmaceutical companies disseminate independent, VHO produced information materials.

  2.2.5  VHOs also play a key role in providing high quality patient education programmes and materials, equipping patients to become effective, informed and economical users of treatments and services.

2.3  Securing resources to support the work of VHOs

  2.3.1  Producing and disseminating patient information and education materials and services forms the core activity of many VHOs. However, this is frequently cost- and labour-intensive.

  2.3.2  Few VHOs are able to fund their work solely through unrestricted donations from the public. As a result, many are reliant on grants from external organisations in order to continue to provide the high quality services which their patient members need.

  2.3.3  The pharmaceutical industry has a tradition of supporting patient groups' work, through grants, support-in-kind or joint activities, from funding towards written grants to funding for self-management programmes. This support has enabled many VHOs to extend their services, to the benefit of patients.

2.4  Maintaining independence

  2.4.1  Whilst this support is valued, a VHO's independence can theoretically be affected by almost any collaboration or donation. Given the privileged position which VHOs enjoy in the public's trust, organisations need to be especially careful to ensure that receiving funding from any source (pharmaceutical industry or elsewhere) does not jeopardise their independence or their ability to provide impartial information, advice and support to patients.

  2.4.2  It is a responsibility which organisations like LMCA take extremely seriously. VHOs are, by their very nature, fiercely independent organisations, resistant to any attempt to coerce or influence. While VHO's are proactive and assertive, seeking to establish appropriate relationships with NHS, Government and industry in order to exert influence on behalf of their patients, they are unafraid to criticise industry supporters, in public if necessary.

  2.4.3  They are also acutely aware of the need to consider the ethics of how and from whom they raise funds, and of the need for complete transparency about funding. Indeed, VHOs routinely declare sources of support and sponsorship, to a degree not matched in other sectors and organisations.

  2.4.4  Where support is sought from pharmaceutical industry, many VHOs have established clear and uncompromising policies and procedures to safeguard against undue influence and exploitation. In its guidance to VHOs, LMCA recommends establishing clear written policies based on agreed principles of:

    —  Integrity and openness about sources of funding.

    —  Maintaining independence.

    —  Equal partnership—between recipient of support and supporter.

    —  Transparency—about objectives and anticipated benefits on both sides. This last point is especially important—successful partnerships are those where both partners gain. Pharmaceutical companies aim to be profitable and will have a marketing agenda, however provided this is acknowledged, and the VHO is satisfied that the relationship will benefit patients first and foremost, this need not preclude constructive partnership working.

  2.4.5  These policies and frameworks will typically cover: boundaries to agreements; specific written arrangements and contracts; product endorsement; standard acknowledgements; use of logos; editorial independence; and "get-out" or decline options. LMCA also recommends regular review of policies and arrangements.

  2.4.6  Such measures are particularly important where a pharmaceutical company or companies provides support for provision of drug information or patient education materials. It is standard practice for VHOs to insist on complete editorial control at the outset of any such arrangement, and to clearly acknowledge the source of funding on published materials. It is also common practice to have medical advisory panels to cast a critical eye and guard against bias.

  2.4.7  Certain behaviours and practices are widely regarded as inappropriate, such as implicitly or explicitly endorsing a particular brand, or engaging in activities which confer a commercial advantage on a particular company. (Indeed, both charity law and agreed best practice preclude the exploitation of a charity's name for non-charitable purposes, and the Charity Commission takes this very seriously.) Whilst instances of this occur from time to time, they are rare.

3.  PUTTING POLICIES INTO PRACTICE

  3.1  Recent research by the Health Coalition Initiative[21] confirmed that many VHOs (and indeed pharmaceutical companies) have developed and implemented these clear policies, alongside contracts for specific projects, clear governance and review arrangements and operating agreements.

  3.2  The pharmaceutical industry itself increasingly also wants to see good practice in its links with VHOs, as evidenced by the work of the Health Coalition Initiative in bringing patient groups and pharmaceutical industry together to review ways of joint working.

  3.3  As a result, many VHOs and pharmaceutical companies have been able to establish and manage constructive, transparent partnerships and activities to the benefit of patients. Initiatives have included:

    —  Good practice development.

    —  Publications.

    —  Events and conferences.

    —  Training, for example in self-management.

    —  Promotion of VHO Membership.

    —  Information on medicines.

4.  CONCLUSIONS

  4.1  LMCA believes that provided there are effective safeguards and procedures in place, well conducted, transparent relationships between voluntary health organisations (VHOs) and the pharmaceutical industry can be highly beneficial to patients, and are possible without any compromise of the independence of the VHOs concerned.

  4.2  LMCA is not aware of any substantial evidence that causes serious concern about relations between its member organisations and the pharmaceutical industry.

  4.3  LMCA believes that voluntary health organisations provide very valuable and independent channels for information, and that information about medicines should not be censored or controlled by any powerful monopolistic organisation—whether Government, NHS, professions or industry.





20   National Asthma Campaign: August 2002 by the National Asthma Campaign (now Asthma UK). Back

21   Health Coalition Initiative is an informal network bringing patient organisations and pharmaceutical companies together to share good practice and develop better understanding of either sector. Activities have included workshops and seminars on patient involvement policies, information on treatments and involving users and carers in research. HCI is currently developing good practice guidance for relationships between patient organisations and industry. Back


 
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