The Role of Patient Organizations

FIGURE 1 Centralized Medical Knowledge.

FIGURE 2 Peer-to-Peer Shared Medical Knowledge.

Patient organizations in the partnership already provide very informative newsletters and updates, organize speakers, seminars, information booths at medical conferences, workshops, and meetings.

In the field of abdominal and pelvic pain, there are many organizations and initiatives with which the organizations in the IPPP work closely, some specifically relating to chronic pain such as Pain Alliance Europe (PAE), the Societal Impact of Pain (SIP), Active Citizenship Network (ACN), and Patients Rights’ activities relating to pain and the International Alliance of Patients Organizations (IAPO). The latter is currently developing a focus on chronic pain with various organizations and countries working together.

Representatives of patient organizations contribute to Cochrane reviews and updates, disease specific international, national and local guidelines, standardization projects, scientific journal articles as well as contributing chapters to medical books. They may also contribute to World Health Organization (WHO) work on International Classification of Diseases (ICD) coding and classification. Furthermore, IPPP members work at EU policy level, contributing to initiatives such as the European Patients’ Academy on Therapeutic Innovation (EUPATI).

The importance of the role of patient organizations is increasingly recognized by political and social authorities at national levels and in the European Union. Laws to emphasize this have been in existence in England and France for several years and have been strengthened during the last decade.

At a wider level, patient organizations themselves need to collaborate or are already collaborating to:

• exchange information

• exchange good practice

• associate to raise awareness

• advocate patient-centred management

at national, European and international levels.

They can do this informally (exchange of information through regular meetings, such as the IPPP) or formally by setting up national networks, such as the Réseau Douleurs Chroniques Pelvi-périnéales (RDCP) in France, a federation of national patients associations working in the field of pelvic pain, or setting up European umbrella associations for specific diseases, such as MICA for interstitial cystitis/bladder pain syndrome in Europe.

Input to the Medical Curriculum

In 1988, A. Kleinmann called for new ways of teaching and training programmes with patient narrative central to the education process. In 2010, the Frenck independent commission called for major reform in health professional education. A recent survey of the undergraduate curriculum in the UK indicates that pain content is woefully inadequate. [2]

Recently, a General Practitioner who is a patient with persistent pelvic pain, wrote: “during the undergraduate course, I do not recall any input regarding management of Chronic Pelvic Pain as a general condition…I don’t recall any undergraduate teaching regarding the basic science, assessment, management, biopsychosocial aspects, self-management of chronic pain”

Following a number of recent publications, work has started to try to improve this situation (see list). However, there is little evidence of any patient or patient organization input into this as yet.

• Chief Medical Officer (CMO) Public Health Report 2008 “Pain: breaking through the barrier” [3]

• UK pain curricula survey and Centre for the Advancement of Interprofessional Education [2,1]

• International Association for the Study of Pain (IASP): Interprofessional, Uniprofessional [7]

• European Federation of IASP Chapters (EFIC) – Societal Impact of Pain, Education taskforce

• North America [6]

• UK Royal College of Obstetricians and Gynaecologists (RCOG) national undergraduate curriculum

The British Medical Association (BMA) has stated that “patients should be actively involved in the development, review and implementation of undergraduate and post graduate medical curricula” and that “patients should be actively involved in teaching during undergraduate and post graduate training”. In a literature review on this subject, Wykurz and Kelly concluded that involving patients as teachers has important educational benefits for learners [8]. Patients offer unique qualities that can enhance the acquisition of skills and change attitudes towards patients. In addition, patients themselves enjoy such involvement. Howe and Anderson suggested involving patients in education as an approach to overcoming some of the difficulties of opportunistic learning in clinical settings [5]. In 2006, the Picker Institute stated that greater use should be made of patients as teachers [4]. Both real and simulated patients have a potentially useful part to play in medical education and there is considerable scope for extending and developing their role. It was also noted that there are currently few examples of good practice. The social sciences have much to contribute to the education of doctors in this field. There is an extensive body of published research evidence on patients’ attitudes and expectations, their experiences of being ill and receiving treatment, and their values and preferences.

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