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Patient empowerment as a component of health system reforms: rights, benefits and vested interests

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Abstract

Different strategies have been developed across countries to foster citizens’ and patients’ involvement, from health policies to patients’ active participation in decisions regarding their health. The spectrum varies from systems where patients lead the reform of health care services, to others where a paternalistic approach still limits patients’ autonomy in decision-making. This paper describes: (1) different interventions for involving patients; (2) experiences to promote consumer evidence-based advocacy; and (3) barriers to consumer involvement in health system reforms, including vested interests in patients’ associations. Citizens’ involvement in health systems can vary substantially, but is gaining increasing weight.

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Acknowledgments

We thank Judith Baggott for her copyediting support.

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Correspondence to Lorenzo Moja.

Additional information

A. Liberati: Deceased.

Appendix

Appendix

Box 1

The James Lind Alliance: prioritization of research that matters to patients

The James Lind Alliance (JLA) is a non-profit making initiative, funded by the UK National Institute for Health Research and the Medical Research Council, which involves patients in identifying and prioritizing unanswered questions about the effects of treatments. This is considered a crucial issue as the research priorities are usually mainly defined by clinicians or researchers, and the market. As a consequence very often research does not respond to patient’s needs [27, 28]. For example, a survey on patients with rheumatoid arthritis showed that their priority treatment outcome was fatigue, not pain [29].

Within the JLA, the research agenda on asthma and urinary incontinence has been prioritized. The top uncertainties identified are: the adverse effects associated with long-term use of short-and-long acting bronchodilators, inhaled and oral steroids, combination and additive therapies in adults, and children; optimal pelvic floor muscle training protocols (frequency and duration of therapy) for different patterns of urinary incontinence. Uncertainties prioritized by the JLA groups have been considered by funding bodies, and are likely to become research projects.

Box 2

The PartecipaSalute: collaboration between representatives of patients and doctors

PartecipaSalute is a research project aimed at building a collaboration between representatives of citizens and patients and representatives of scientific and medical communities. The promoter is the Mario Negri Institute for Pharmacological Research, in collaboration with the Italian Cochrane Centre and Zadig, an editorial publishing company. The aim of the project is to encourage informed participation on choices and decisions in health care [30]. Two advisory groups collaborate: a multidisciplinary technical scientific committee and a group of representatives of associations and lay members of ethics committees. The three main areas are: (1) knowledge data collection on the meaning of consumer involvement among patients’ and consumers’ associations, medical scientific societies, ethics committees [31, 32]; survey of patients’ needs related to research [33], and analysis of the quality of information to lay people [34]; (2) empowerment training courses for volunteer associations and lay members of ethics committees [35], and a website for lay people (http://www.partecipasalute.it); (3) partnership consensus conferences on information to the public [36], and establishing a multidisciplinary working group to orient clinical research, starting from clinical or assistance questions identified by patients.

Box 3

PyDEsalud, Participa y Decide sobre tu salud: shared decision-making

PyDEsalud is an integrated Web Platform promoted by the Evaluation Unit of the Canary Islands Health Service (SESCS) in Spain [37, 38]. It aims to promote the improvement of knowledge, autonomy and active participation of people about their health problems. This platform includes three lines of research: (1) information on important aspects of health and chronic diseases with heavy impact; (2) personal experience of patients reporting their symptoms, treatments and ways to cope with their conditions; (3) patient decision aids to support shared decision-making by patients and health professionals.

For conditions where there is no single or “best” treatment option (e.g., depression, diabetes, breast cancer) PyDEsalud reports and incorporates patient’s preferences to support rational and informed, shared decision-making.

Box 4

The Cochrane Consumer Network: dissemination of high-quality evidence

Patients have been involved in the Cochrane Collaboration since its beginning in 1993. From 1995 the work has been supported by the Cochrane Consumer Network, an international organization of volunteers operating through the web [39]. Consumer activities are mainly to disseminate review findings and evidence-based medicine methods, to write plain language summaries (PLS) of reviews, and to comment on reviews and protocols. PLSs aim to summarize reviews in a straightforward style that can be understood by consumers. They are freely available on the internet (http://www.cochrane.org/), so will often be read as stand-alone documents.

When consumer involvement starts from the very beginning of the review process, consumers’ roles go from ensuring that a review question is relevant to people requiring health care, to identifying outcomes, and prioritizing topics for new reviews. Some review groups consider consumer input in deciding review topics. The Cochrane Review Group covering incontinence, for example, shortlisted reviews following the topics prioritized by patients and clinicians through the James Lind Alliance Priority Setting Partnership [40].

According to a survey conducted by the Cochrane consumer network, 35 of the 52 Cochrane review groups stated they involved consumers.

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Colombo, C., Moja, L., Gonzalez-Lorenzo, M. et al. Patient empowerment as a component of health system reforms: rights, benefits and vested interests. Intern Emerg Med 7, 183–187 (2012). https://doi.org/10.1007/s11739-012-0757-1

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