5. Evidence submitted by the Association
of the British Pharmaceutical Industry (PPI 79)
1.1 The Association of the British Pharmaceutical
Industry (www.abpi.org.uk) is the trade association for about
ninety companies in the UK that research and produce prescription
medicines. The Involved Patient Initiative Taskforce (IPI) of
the ABPI has been working with patient groups to encourage and
improve patient centred care across the health sector.
1.2 The IPI mission is:
To further ABPI involvement with patients and
patient groups, by fostering a broad dialogue across a range of
issues that affect people's health, including the discovery, development,
supply and use of medicines and to find ways in which we can better
meet their needs and ultimately, improve the health of the public.
1.3 Within IPI we are working to:
— Encourage involved patients
— Engage with patient groups and stakeholders
— Advocate best practice in medicines
information
— Facilitate partnership approaches
— Improving access to medicines information
— Putting patients at the centre of
our work
2. ABPI RESPONSE
TO THE
HEALTH SELECT
COMMITTEE INQUIRY
We would like to respond in particular to two
questions raised in the inquiry, namely:
"What is the purpose of patient and public
involvement?" and "What form of patient and public involvement
is desirable, practical and offers good value for money?"
2.1 What is the purpose of patient and public
involvement?
There is a growing recognition of the need to
improve the availability, quality and accessibility of information
about medicines for the public. This is being driven by a number
of stakeholders including patients themselves, the Government,
the NHS, the regulatory authorities and the pharmaceutical industry.
An informed patient knows that treatment options exist; is more
able to have a successful consultation with health professionals;
and is more likely to take medicines as prescribed, leading to
better outcomes for patients, families, health professionals and
the NHS. The ABPI actively supports the Ask about Medicines activities
which encourage the availability of medicines information to patients.
2.2 Increased patient involvement in decision
making during all aspects of patient care relies on appropriate
information. Healthcare providers need to help patients in understanding
better by providing them with high quality information about their
care. This is why the ABPI has been working with its member companies
to support the Department of Health's information strategy.
2.3 Why is it useful for patients to have
information about medicines?
— Informed patients are better able
to take charge of their own healthcare. This is welcomed by many
healthcare professionals and also by the pharmaceutical industry,
as it leads to better patient understanding, better compliance
with medication and less wastage.
— By engaging in an informed dialogue
with their doctor, patients are more likely to take an active
role in tackling their illness—not just with regard to medicines,
but with other aspects such as lifestyle and dietary changes.
2.4 What form of patient and public involvement
is desirable, practical and offers good value for money?
In the last two years the industry has been
working with Cancerbackup and Diabetes UK to highlight current
information gaps and to offer solutions. Together with our partners
and Ask about Medicines we have produced the CancerMaze report[1]
and the Diabetes Jigsaw report,[2]
which highlighted the shortcomings in the area of information
provision for patients. We are currently working with our partners
to explore and develop the information prescription concept—the
idea to develop personalised information signage for patients.
2.5 Information prescriptions, provided
by the healthcare professional at the time of consultation are
an individualised way to "signpost" patients to appropriate
sources of further information and support. The prescription would
be given following discussions about the patient's concerns, fears
and information needs surrounding their diagnosis and treatment.
3.1 Example Diabetes
The Diabetes Information Jigsaw report found
that there are significant missing pieces of information for patients
about their diabetes. In particular, more than a third of people
with diabetes are unaware that they will have the condition for
life and half don't know that diabetes can reduce their life expectancy.[3]
Partly as a result of this missing information, nearly two thirds
(65%) of people with diabetes are not taking their medications
as prescribed, and one in three people don't understand what their
diabetes medications are for or how to take them because they
feel stupid asking questions. Over half (57%) find it difficult
to ask questions because they feel there is not enough time during
the consultation to answer all their queries or their doctor seems
too busy. Perhaps most worryingly a quarter (25%) don't understand
what their medicines are for or how to take them because despite
having asked, they don't feel their doctor or nurse sees the benefit
in informing them.
3.2 The Diabetes Information Jigsaw survey
also revealed that 60% of people with diabetes don't know as much
as they would like about their treatment options. One reason for
their confusion is that they have a poor understanding of medical
terms and phrases commonly used in consultations, with nearly
a fifth (18%) not understanding as much as they would like about
their treatments because they can't understand what their doctor
or nurse is telling them. To make matters worse over a third (36%)
don't even know what questions to ask about their treatment options.
3.3 Therefore, in order to empower people
with diabetes to communicate with their healthcare professional
and help improve their understanding of medicines, the ABPI in
partnership with Diabetes UK and Ask about Medicines has produced
the following two resources:
3.4 A booklet Ask About Your Diabetes
Medicines[4]
contains questions that people might want to ask healthcare professionals
involved in their treatment throughout their diagnosis and treatment
path. It also signposts people to further sources of information,
including patient friendly Medicine Guides for Diabetes which
are available on www.medicines.org.uk. The new Medicine Guides
provide easy to understand information about every diabetes medicine
to help people with diabetes use their medicines safely and effectively,
and make better informed choices about treatment, with their health
professional.
3.5 Medicine Guides have been developed
as part of the Medicines Information Project (MIP)[5],
which is creating a new comprehensive structured source of information
about medicines alongside information about the condition and
all the treatment options. Medicine Guides are linked to information
about the condition and the range of treatment options available,
provided via NHS Direct Online.
3.6 These two resources aim to help people
make better informed choices about treatment, with their health
professional, and to understand and use their medicines safely
and effectively.
4. EXAMPLE CANCER
4.1 The Cancer Information Maze is
a report which draws together existing research, literature and
opinion and contributes to better understanding of patient attitudes,
beliefs and experiences of cancer medicines information. The report
highlights that people who have cancer feel lost in a maze of
information and are failing to understand their condition. The
report was launched on 15 November 2005 to the media and was presented
to the Department of Health by Ian Gibson MP, Chair of the All
Party Parliamentary Group on Cancer. One of the calls made in
the report is the need to develop the information prescription
concept and provide information signposting to patients.
5. CONCLUSION
The industry would like to be seen as one of
the providers of medicines information so that it can give each
patient the information they desire. All patients should have
access to information about their condition, the treatment options
available and the risks and benefits of different options, relative
to their own situation. Easy access to high quality, reliable
patient-friendly medicines information is key to enabling people
to:
— Understand their medicines better;
— Participate in decisions about their
own treatment; and
— Make use of the medicines they have
been prescribed.
Association of the British Pharmaceutical Industry
January 2007
1 The Cancer Maze Report published by ABPI, Ask About
Medicines, Cancerbackup, Nov 2005. Back
2
The Diabetes Information Jigsaw Report published by ABPI, Ask
About Medicines, Diabetes UK July 2006. Back
3
Awareness of diabetes and Diabetes UK amongst the general public
published by Diabetes UK/MORI February 2006. Back
4
Ask About Your Diabetes Medicine, booklet published by Ask About
Medicines November 2006. Back
5
Medicines Information Project-a multidisciplinary working group
working to improve medicines information to patients and carers
(www.medicines.org.uk). Back
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