Objectives: We developed specific evaluation criteria to assess patient and public involvement in resource allocation decisions in health care.

Methods: We reviewed the literature from health and other sectors relevant to stakeholder involvement and conducted twenty-seven key informant interviews with stakeholders knowledgeable about patient and public involvement in Canadian drug resource allocation decisions. We used an inductive qualitative thematic approach to analyze the interviews with codes and categories developed directly from individuals’ interview transcripts.

Results: Integrating respondents’ comments and the literature review, we identified nine evaluation criteria of patient and the public involvement in healthcare resource allocation decision making: clarity regarding rationale and roles of patient and public members, sufficient support, adequate representation of relevant views, fair decision-making processes, legitimacy of committee processes, adequate opportunity for participation, meaningful degree of participation, noticeable effect on decisions, and considerations of the efficiency of patient and public involvement.

Conclusions: Our results will help to develop methods to evaluate patient and public involvement in healthcare decision making.

In recent years there has been a distinguishable trend towards user involvement in ageing research. Researchers and policy makers both are increasingly convinced that user involvement is necessary to adapt research questions and methods to meet the needs of older people. Little is known, however, about the quality of collaborations between older people and researchers. This study systematically evaluates a collaboration undertaken between two academic researchers and three older people acting as co-researchers in an effort to identify the conditions required for equal collaboration. To evaluate the collaboration the co-researchers and academic researchers took part in individual in-depth interviews (after six months) and two reflection meetings (after six and 12 months). Throughout the collaboration, field notes were taken by both academic researchers and co-researchers. A detailed description of the collaboration is provided here, using the metaphor of a journey to illustrate the dynamics and the learning process of the participants. Interim reflection meetings – at which mutual expectations were expressed along with a frank discussion of prejudices, tasks and role divisions, and the sharing of personal and project-related needs and information – were found to be fruitful in achieving a positive working relationship and fostering an effective collaboration. We conclude that a learning perspective on participation can be a resource for learning and adaptive change.

Objectives: To obtain further information from members of the International Network of Agencies for Health Technology Assessment (INAHTA) on the involvement of consumers in their programs.

Methods: A questionnaire for a survey was developed and sent to member agencies in November 2010. Survey responses were compared with those from an earlier survey conducted in 2005.

Results: Of the thirty-three agencies that provided responses, 67 percent involve consumers in some aspects of their health technology assessment (HTA) programs, compared with 57 percent in 2005. As in the earlier survey, most agencies reporting involvement have contact with consumer or patient organizations and a large minority also involve individual consumers. Summaries of HTA reports that are intended to be easily understood by consumers are prepared by 84 percent of the agencies, and 42 percent involve consumers in dissemination of HTA material. In both areas, there was some increase from the levels previously reported.

Conclusions: The survey results suggest that there is a trend to increased involvement of consumers by the INAHTA agencies in their programs but that the level of involvement remains relatively limited. The manner of consumer participation varies between agencies.

Aims – Service user involvement in mental health service development and research is becoming more common in countries like the UK. USA and Canada. This systematic review of the international scientific literature has been carried out to assess the stage of development of mental health service users involvement in research. Method – Systematic review of any research project actively involving service users in any part of the research process. Results – Thirty-five studies met the inclusion and exclusion criteria and were included in the systematic review. Nine studies used quantitative techniques, 24 used qualitative techniques and two studies used both quantitative and qualitative techniques. While three studies were user-led, in three other studies the users were simply consulted but did not have any active role in the research. The remaining 29 studies were based on a collaboration between service users and professional researchers. Conclusions – The involvement of mental health service users in the research process is feasible both in quantitative and qualitative research studies. The involvement of service users in research has a number of benefits; such research requires more accurate planning and more time than the traditional research.

Declaration of Interest: none.

Objectives: The aim was to learn about perspectives of consumers contributing to the work of the Division of Research, Audit and Academic Surgery of the Royal Australasian College of Surgeons. The research arm of the Division has worked with consumers since it was formed in 1998.

Methods: Nine consumers who worked with the Division over the past 5 years completed (1) a written survey focused on their background and past experience, and (2) a semi-structured phone interview focused on their motivations for becoming involved in this work; their role; the evolution of the role of consumers in healthcare research; and what health information for consumers should contain.

Results: Participants came from various backgrounds and had different motivations for being involved. A common theme was concern about uncertainties in surgery and the need to provide consumers with information about potential benefits and risks of a procedure. Participants believed that a consumer presence was vital in research on surgical procedures, and that the content and wording of consumer information must be chosen carefully in order for the public to use it in a meaningful way. They also acknowledged the changing role of the consumer, who was rapidly becoming a partner in the doctor–patient relationship.

Conclusions: In surgical research and audit, the consumer perspective is unique and informed by a wealth of experience. The findings of this study may be of interest to other health technology assessment and associated agencies seeking to involve consumers within their own research process.

Objectives: This study assessed patients' views of a methadone programme in a Dublin general practice including the degree to which the patients were ‘involved in decisions about their treatment’.

Method: All patients receiving methadone were asked to participate. A face to face questionnaire, with open and closed questions, was administered. Interviews lasted approximately 30 minutes. Quantitative data were analysed using descriptive statistics and qualitative data were analysed using a thematic approach.

Results: Forty one (87%) of the 47 patients attending the general practice methadone service were interviewed. Of the 39 patients who had used heroin on admission, 69% had stopped and 31% reduced heroin use since starting methadone treatment. A total of 71% reported that the doctor either always involved (59%) or sometimes involved (12%) them in decisions about their treatment. Involvement was interpreted as ‘being listened to’ or ‘having a say’ in deciding methadone dose. Surprisingly those who reported that they were not involved in treatment decisions were more likely to have stopped heroin use (10/11). A significant majority of patients (81%) expressed the desire to stop taking methadone.

Conclusion: Most patients receiving methadone in general practice were listened to and had a say in deciding their methadone dose but did not have an opportunity to engage in more structured or contractual forms of involvement in treatment such as written care plans. In line with a patient centred approach, treatment providers should set their sights beyond the safe delivery of methadone, to provide a service which is centred on patient goals, expectations and choice.

Objectives: This study explores the factors that enhance or reduce the prospects for public involvement in the activities of health technology assessment (HTA) agencies.

Methods: The analytical framework for this study is based on the work of John W. Kingdon, which provides a comprehensive synthesis of the factors influencing governments and public organizations' agenda. The study draws insights from forty-two semistructured telephone interviews with informants involved in international HTA networks and/or in HTA agencies in Canada, Denmark, and the United Kingdom.

Results: This exploratory study suggests that the HTA community is moving toward greater public involvement. However, the HTA community remains cautious and ambivalent about the technical feasibility of public involvement, its acceptability to policy makers and practitioners, and its impacts on HTA agencies' resources and procedures.

Conclusions: The study stresses the importance of conducting rigorous and compelling evaluations to inform HTA agencies' decision to adopt, or reject, public involvement practices.

Objectives: Although increasing effort is being devoted to developing strategies to increase knowledge transfer and the uptake of health technology assessment (HTA) by various stakeholders, very little is known about the utilization and dissemination of HTA findings by patient and consumer organizations. The goal of this study is to understand how and why patient and consumer organizations use HTA findings within their organizations, and what factors influence how and when they communicate their findings to members or other organizations.

Methods: We examined the use and dissemination of four controversial HTA reports by sixteen patient and consumer organizations in Ontario and Quebec. We gathered data from semistructured interviews conducted between December 2006 and April 2007.

Results: Although HTA findings are often used by the patient and consumer organizations, key differences were observed in exactly how the four HTA reports were used. Three types of use (instrumental, conceptual, and symbolic) are reported and illustrated. We highlight the importance of the organization's mission and knowledge base in explaining the types of use observed.

Conclusions: We contend that the use and dissemination of HTA reports by specific groups could help in widening the debate around controversial health technologies. The implications and opportunities for HTA agencies relate to the following: (i) identification of “lay” organizations that could help in disseminating results; (ii) acknowledgement of a “lay” audience for HTA findings; (iii) strategic inclusion of advocacy groups during the assessment process for highly controversial technologies; and (iv) contribution of these organizations to the push efforts of knowledge transfer.

Objectives: The aim of this study was to obtain information from members of the International Network of Agencies for Health Technology Assessment (INAHTA) on their involvement of consumers (patients, carers, and related organizations) in their programs.

Methods: A questionnaire for a survey was developed and sent to member agencies in October 2005.

Results: Of the thirty-seven agencies that provided responses, 57 percent involve consumers in some aspects of their HTA programs and 83 percent intend to involve consumers in the future. Summaries of HTA reports that are intended to be easily understood by consumers are prepared by 49 percent of the agencies, and 36 percent involve consumers in dissemination of HTA material.

Conclusions: Most INAHTA members involve consumers in some aspects of their programs, although not always routinely. Involvement seems likely to increase in the future.