Patient and public involvement (PPI) in the Brazilian Health Technology Assessment (HTA) process occurs in response to a legislative mandate for “social participation.” This resulted in some limited patient participation activities, and, therefore, a more systematic approach was needed. The study describes the development of a suggested framework for action to improve PPI in HTA.

This work used formal methodology to develop a PPI framework based on three-phase mixed-methods research with desktop review of Brazilian PPI activities in HTA; workshop, survey, and interviews with Brazilian stakeholders; and a rapid review of international practices to enact effective patient involvement. Patient partners reviewed the draft framework.

According to patient group representatives, their involvement in the Brazilian HTA process is important but could be improved. Different stakeholders perceived barriers, identified values, and made suggestions for improvement, such as expansion of communication, capacity building, and transparency, to support more meaningful patient involvement. The international practices identified opportunities for earlier, more active, and collaborative PPI during all HTA stages, based on values and principles that are relevant for Brazilian patients and the public. These findings were synthesized to design a framework that defines and systematizes actions to support PPI in Brazil, highlighting the importance of evaluating these strategies.

Since the publication of this framework, some of its suggestions are being implemented in the Brazilian HTA process to improve PPI. We encourage other HTA organizations to consider a systematic and planned approach with regular evaluation when pursuing or strengthening involvement practices.

Worldwide, governments employ health technology assessment (HTA) in healthcare funding decision making. Requests to include public perspectives in this are increasing, with the idea being that the public can identify social values to guide policy development, increasing the transparency and accountability of government decision making.

To understand the perspectives of the Canadian public on the rationale and design of public involvement in HTA.

A demographically representative sample of residents of a Canadian province was selected to take part in two sets of two focus groups (sixteen people for the first set and twenty for the second set).

Participants were suspicious of the interests driving various stakeholders involved in HTA. They saw the public as uniquely impartial though also lacking knowledge about health technologies. Participants were also suspicious of personal biases and commended mechanisms to reduce their impact. Participants suggested various involvement methods, such as focus groups, citizens' juries and surveys, noting advantages and disadvantages belonging to each and commending a combination.

We identified a lack of public understanding of how decisions are made and distrust concerning whose interests and values are being considered. Public involvement was seen as a way of providing information to the public and ascertaining their views and values. Participants suggested that public involvement should employ a mixed-methods strategy to support informed debate and participation of a large number of people.

In a previous paper, we presented results from a 12-week study of a Psychomotor DANCe Therapy INtervention (DANCIN) based on Danzón Latin Ballroom that involves motor, emotional-affective, and cognitive domains, using a multiple-baseline single-case design in three care homes. This paper reports the results of a complementary process evaluation to elicit the attitudes and beliefs of home care staff, participating residents, and family members with the aim of refining the content of DANCIN in dementia care.

An external researcher collected bespoke questionnaires from ten participating residents, 32 care home staff, and three participants’ family members who provided impromptu feedback in one of the care homes. The Behavior Change Technique Taxonomy v1 (BCTTv1) provided a methodological tool for identifying active components of the DANCIN approach warranting further exploration, development, and implementation.

Ten residents found DANCIN beneficial in terms of mood and socialization in the care home. Overall, 78% of the staff thought DANCIN led to improvements in residents’ mood; 75% agreed that there were improvements in behavior; 56% reported increased job satisfaction; 78% of staff were enthusiastic about receiving further training. Based on participants’ responses, four BCTTv1 labels–Social support (emotional), Focus on past success and verbal persuasion to boost self-efficacy, Restructuring the social environment and Habit formation–were identified to describe the intervention. Residents and staff recommended including additional musical genres and extending the session length. Discussions of implementing a supervision system to sustain DANCIN regularly regardless of management or staff turnover were suggested.

Care home residents with mild to moderate dementia wanted to continue DANCIN as part of their routine care and staff and family members were largely supportive of this approach. This study argues in favor of further dissemination of DANCIN in care homes. We provide recommendations for the future development of DANCIN based on the views of key stakeholder groups.

Patient and Public involvement (PPI) in health care occupies a central place in Western democracies. In England, this theme has been continuously prominent since the introduction of market reforms in the early 1990s. The health care reforms implemented by the current Coalition Government are making primary care practitioners the main commissioners of health care services in the National Health Service, and a duty is placed on them to involve the public in commissioning decisions and strategies. Since implementation of PPI initiatives in primary care commissioning is not new, we asked how likely it is that the new reforms will make a difference. We scanned the main literature related to primary care-led commissioning and found little evidence of effective PPI thus far. We suggest that unless the scope and intended objectives of PPI are clarified and appropriate resources are devoted to it, PPI will continue to remain empty rhetoric and box ticking.

To examine the effect of previous PPI initiatives on health care commissioning and draw lessons for future development.

We scanned the literature reporting on previous PPI initiatives in primary care-led commissioning since the introduction of the internal market in 1991. In particular, we looked for specific contexts, methods and outcomes of such initiatives.

1. PPI in commissioning has been constantly encouraged by policy makers in England. 2. Research shows limited evidence of effective methods and outcomes so far. 3. Constant reconfiguration of health care structures has had a negative impact on PPI. 4. The new structures look hardly better poised to bring about effective public and patient involvement.

Public involvement, both in the National Health Service (NHS) and in clinical research, is promoted as an important democratic principle. The declared aims are to reduce professional autocracy and allow a broader ownership of the research agenda; also to improve the design of, and recruitment and retention of patients to, clinical studies. There have been a number of national initiatives in the UK to improve public input to clinical research activities, but very few reports of effective and sustainable partnerships over time. This study reports the evaluation of one example, which is embedded in the NHS and university partnerships in the Norfolk area of England.

Evaluate:

• Putting principles into practice of public involvement in research over a 5 year period for one specific project (Patient and Public Involvement in Research).

• How the model contributes to, and impacts upon, all stages of the research process.

• Attitudes of the research community and lay volunteers to their mutual experiences of public involvement.

• Key factors and strengths of this project, and areas for improvement.

A mixed methods approach related to the 5 years from start of 2003 to end of 2007. This used descriptive statistics of volunteer activity, interviews with key stakeholders (13), questionnaires (53% response rate), and focus group with 10 volunteers to explore emergent themes. We analysed findings using a policy framework approach.

About 47 of the original 55 volunteers remained on the panel after 5 years. All have undertaken training, 38% have been involved in the full range of research activities offered, and 75% have attended at least one research project meeting. Some are active in governance, ethics, and advisory committees.

Both the research community and the volunteers are very positive about the project. The researchers find it provides well prepared personnel, and gives a speedy and efficient way of fulfilling the expectations of funders for lay input. The volunteers find it gives them important opportunities to influence the quality of research and thus support improvements in patient care. Areas for improvement include increasing social diversity among the volunteers, and improving feedback on input from volunteers, without which volunteers tend to lose confidence and motivation.

Long-term sustainable and valuable public input to research is possible. Key factors are committing resources, embedding the service in the infrastructure of a research consortium, and ongoing responsiveness by NHS staff and researchers. Additional activity to recruit and support access may be needed to attract people from a broad range of sociodemographic backgrounds. Some volunteers want more involvement than this model currently offers.