Lay people involvement in the consensus conference Informing women on hormone replacement therapy

Article type
Authors
Colombo C, Satolli R, Liberati A, Donati S, Mele A, Mosconi P
Abstract
Background: Views about hormone replacement therapy (HRT) vary among scientific societies, specialists and general practitioners. Also consumer associations often give contradictory messages. Therefore, women are likely to receive unbalanced information on the pros and cons of taking hormones for menopause. To evaluate the quality of information on HRT and make an overview of HRT risks and benefits, the Partecipasalute project – coordinated by the Mario Negri Institute with the Italian Cochrane Centre and Zadig, a scientific publishing agency – and the National Guideline System organised a national consensus conference. Objectives: To involve lay people (not healthcare professionals), particularly women, in the consensus conference in order to consider their information needs and points of view about menopause and HRT. Methods: The organizing committee and the scientific board defined the questions which the jury was called to answer and the composition of the jury. Three multidisciplinary working groups (MWGs) were also set up and charged with the running of an overview of the scientific literature and two surveys on the quality of information published in lay press and booklets targeted to women. A survey on women’s knowledge, attitude and practice was also conducted. Lay people were involved both in the MWGs and in the jury; most of them attended the Partecipasalute training courses. Journalists were also involved. Results: Seven of the 14 members of the jury were lay people. The final statements were agreed by all the jury and disseminated using two registers: a key points summary written in plain language and an extended technical version. Conclusions: In Italy, this is one of the first experiences of direct involvement of lay people in a setting usually restricted to healthcare professionals, supporting their active participation in defining information priorities on the issue covered. All the participants expressed a positive judgment about this experience.