For healthcare professionals, there has always been a belief that due to their educational qualifications, they have the ideal background to understand medical research and its developments. However, over the years the tendency of patients to question the advice they are given has grown and they are taking a much more active interest in healthcare issues, particularly through patient organizations. With the expansion of the Internet, these patient groups have been able to disseminate more information to their members, thereby increasing membership and influence. Patient power
Patient attitudes are clearly changing and this is not just in the major healthcare markets. In India, the Cancer Patients Aid Association has been active in helping patients cope with cancer and has also worked in neighbouring countries (1). This patient organization was recently in the news for challenging a Novartis patent application (2).
Pharmaceutical companies and healthcare providers can expect greater patient advocacy, since many local and national patient organizations are now part of international networks. Due to their familiarity with modern media, such groups can be a formidable force. One such example is the International Alliance of Patients’ Organizations (IAPO) which represents patients of different nationalities and across all disease areas (3). As well as informing their members, IAPO aims to influence health policy in different countries to ensure that it reflects the views of patients. IAPO currently has around 160 full members and a number of associate members. Many of these member organizations themselves represent smaller and more local bodies of patients (3).
In many countries, governments are keen to drive down healthcare spending and this has resulted in certain costs being shifted to patients. As a result, there is an even greater incentive for patients to take an interest in the type of medical care they are being offered. Despite these trends, not all healthcare providers are taking into account patient attitudes and perceptions regarding their services as a matter of routine. Moreover, policy changes by governments often relate more to election cycles than a real desire to involve patients in healthcare strategy. The ‘educated’ patient
Information on diseases or drugs gathered by the patient is provided by a variety of sources, and these have increased dramatically over the past decade. Yet, just because such information is available does not necessarily mean that a patient learns the correct details about a disease or medicine (4). In fact much of this information is not sufficiently technical for medical purposes and can lead to a patient misunderstanding details of the disease they are suffering from or the medicine they are taking (4). Moreover, each patient will tend to understand the information in relation to his or her educational and socio-economic background (4).
In Spain, a University for Patients (La Universidad de los Pacientes) has recently been set up in recognition of changing patients attitudes (5). Backed by Barcelona’s Universitat Autònoma, other educational bodies and certain pharmaceutical companies, the new university will provide patients with educational material and courses designed to improve their understanding of healthcare research and practice. The university will be equipped with its own library, and material both in electronic and print format will be made available to students. The courses will also make use of new technologies to create ePatient initiatives. Specialized courses will be run to introduce medical terminology to those who do not have a scientific background, but there will also be courses covering legal, social and other related aspects of healthcare. Students will also have the opportunity to meet experts in these fields. If this pioneering approach to patient education proves successful, the university is likely to expand its offerings in order to attract other patients around Europe. Outlook
There has been a dramatic change in patient attitudes towards healthcare and to those who provide it. Although many in the healthcare sector have recognized the trends, others continue to view patients as an unsophisticated and passive audience. This is far from the case, especially considering that most patient groups are well funded, well organised and well connected. Those in the healthcare sector who fail to take account of patient viewpoints or make automatic assumptions about what patients will accept may be in line for a shock. What is being seen at the moment is simply the start of a transformation of the patient’s role in healthcare. It is up to governments, companies and healthcare professional to keep up with the pace of change and adapt. References
- Cancer Patients Aid Association.
- Anon (2006). Cancer Patient Group files Patent Opposition.
- International alliance of patients' organizations.
- Davies M. and Kermani F. (2006). Patient Compliance: Sweetening the Pill. ISBN: 0 566 08658. Gower Publishing.
- La Universidad de los Pacientes.
Dr Faiz Kermani has several years experience in both academia and the pharmaceutical industry. He has worked in pharmaceutical R&D, pricing and reimbursement, marketing and medical communications. He holds a PhD in Immunopharmacology from St. Thomas’ Hospital, London and a First Class Honours degree in Pharmacology with Toxicology from King’s College, London. He has written extensively on international healthcare issues, and is on the editorial board of a number of publications. In March 2006, he was a delegate on the UK Government’s Trade and Investment Biotech Scoping Mission to China and was a speaker at the subsequent presentation.
You can contact Dr Kermani via firstname.lastname@example.org