Select Committee on Health Written Evidence

5. Evidence submitted by the Association of the British Pharmaceutical Industry (PPI 79)

  1.1  The Association of the British Pharmaceutical Industry ( 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


  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 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.


  4.1  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.


  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 ( Back

previous page contents next page

House of Commons home page Parliament home page House of Lords home page search page enquiries index

© Parliamentary copyright 2007
Prepared 6 February 2007