Disentangling patient and public involvement in healthcare decisions:why the difference matters

Patient and public involvement has become an integral aspect of many developed health systems and is judged to be an essential driver for reform. However, little attention has been paid to the distinctions between patients and the public, and the views of patients are often seen to encompass those of the general public. Using an ideal-type approach, we analyse crucial distinctions between patient involvement and public involvement using examples from Sweden and England. We highlight that patients have sectional interests as health service users in contrast to citizens who engage as a public policy agent reflecting societal interests. Patients draw on experiential knowledge and focus on output legitimacy and performance accountability, aim at typical representativeness, and a direct responsiveness to individual needs and preferences. In contrast, the public contributes with collective perspectives generated from diversity, centres on input legitimacy achieved through statistical representativeness, democratic accountability and indirect responsiveness to general citizen preferences. Thus, using patients as proxies for the public fails to achieve intended goals and benefits of involvement. We conclude that understanding and measuring the impact of patient and public involvement can only develop with the application of a clearer comprehension of the differences.

VALIDATION STUDY OF HEALTH BELIEFS SCALE

Introduction: The Health Belief Scale is a questionnaire used to assess a wide range of beliefs related to health. The objective of this study was to undertake construction and culturally adapt the Health Belief Scale (HBS) to the Portuguese language and to test its reliability and validity. Methods: This new version was obtained with forward/backward translations, consensus panels and a pre-test, having been inspired by some of the items from “Canada’s Health Promotion Survey” and the “European Health and Behaviour Survey”, with the inclusion of new items about food-related beliefs. The Portuguese version of Health Belief Scale and a form for the characteristics of the participants were applied to 849 Portuguese adolescents. Results: Reliability was good with a Cronbach’s alpha coeficient of 0.867, and an intraclass correlation coeficient (ICC) of 0.95. Corrected item-total coeficients ranged from 0.301 to 0.620 and weighted kappa coeficients ranged from 0.72 to 0.93 for the total scale items. We obtained a scale composed of 13 items divided into ive factors (smoking and alcohol belief, food belief, sexual belief, physical and sporting belief, and social belief), which explain 57.97% of the total variance. Conclusions: The scale exhibited suitable psychometric properties, in terms of internal consistency, reproducibility and construct validity. It can be used in various areas of research.