Memorandum by Long-term Medical Conditions
Alliance (PI 36)
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
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
industryguidelines 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
2. THE NEED
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 treatmentsand
their side effectscan 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
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
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
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
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
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
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
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
Equal partnershipbetween recipient
of support and supporter.
and anticipated benefits on both sides. This last point is especially
importantsuccessful 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
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
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
3.1 Recent research by the Health Coalition
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
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.
Events and conferences.
Training, for example in self-management.
Promotion of VHO Membership.
Information on medicines.
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 organisationwhether
Government, NHS, professions or industry.
20 National Asthma Campaign: August 2002 by the National
Asthma Campaign (now Asthma UK). Back
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