Series: Public engagement with research. Part 3: Sharing power and building trust through partnering with communities in primary care research.

BACKGROUND: This article focuses on potential strategies to support primary care researchers in working in partnership with the public and healthcare professionals. Partnership working can potentially to improve the relevance and usefulness of research and ensure better research and health outcomes. DISCUSSION: We describe what we mean by partnership working and the importance of reflecting on power and building trusting relationships. To share power in partnership working, it is essential to critically reflect on the multiple dimensions of power, their manifestations, and your own power. Power can influence relationships and therefore, it is essential to build trust with partners. Next, we outline how the context of primary care research and decisions about who you work with and how to work together, are vital considerations that are imbued with power. Lastly, we suggest different ways of working in partnership to address different dimensions of power. We provide examples from primary care research across Europe regarding how to recognise, tackle, and challenge, invisible, hidden and visible power. CONCLUSION: We conclude by proposing three calls to actions to encourage researchers working in primary care to consider the multiple dimensions of power and move towards partnership working. First is to use participatory methods to improve the inclusivity of your research. Second is to include patients and the public in decisions about the design, delivery and development of research and its outcomes. Third is to address various systemic and institutional barriers which hinder partnership working.

Partnership approaches to primary care research can potentially improve the relevance, usefulness and inclusivity of research.Working in partnership involves researchers and the public sharing power in important research decisions and building trusting relationships.Recognising and addressing power differentials and building trusting relationships requires time and effort.

Mind the evidence gap: the use of patient-based evidence to create "complete HTA" in the twenty-first century.

The aim of this paper is to review the concept of patient-based evidence in health technology assessment (HTA), drawing on philosophical ideas of knowledge in order to judge whether current approaches to the use of evidence for HTA are complete. We draw on a number of key sources, including key papers and book chapters, discussion forums, agency reports, and conference presentations. We develop the potential dimensions of patient-based evidence, describe its key attributes, and consider its future development. Patient-based evidence has the potential to be a key concept in HTA, comprised of a series of related elements of importance to patients. We recognize that we raise more questions than can be answered, but as an emerging concept, recognition and understanding of patient-based evidence is still developing. The concepts and methods that support its application in HTA require urgent development. We conclude that clinical and economic forms of evidence are not enough for HTA. For HTA to be complete, we need to consider all relevant aspects of the phenomena, including patient-based evidence. There is now an urgent need for the global research and HTA community to work together to realize the full potential of patient-based evidence through conceptual and methodological development and wider recognition. We advocate that a task force be set up to address these urgent issues.

Demonstrating the influence of HTA: INAHTA member stories of HTA impact.

A central function of health technology assessment (HTA) agencies is the production of HTA reports to support evidence-informed policy and decision making. HTA agencies are interested in understanding the mechanisms of HTA impact, which can be understood as the influence or impact of HTA report findings on decision making at various levels of the health system. The members of the International Network of Agencies for HTA (INAHTA) meet at their annual Congress where impact story sharing is one important activity. This paper summarizes four stories of HTA impact that were finalists for the David Hailey Award for Best Impact Story.The methods to measure impact include: document review; claims analysis and review of reimbursement status; citation analysis; qualitative evaluation of stakeholders' views; and review of media response. HTA agency staff also observed changes in government activities and priorities based on the HTA. Impact assessment can provide information to improve the HTA process, for example, the value of patient and clinician engagement in the HTA process to better define the assessment question and literature reviews in a more holistic and balanced way.HTA reports produced by publicly funded HTA agencies are valued by health systems around the globe as they support decision making regarding the appropriate use, pricing, reimbursement, and disinvestment of health technologies. HTAs can also have a positive impact on information sharing between different levels of government and across stakeholder groups. These stories show how HTA can have a significant impact, irrespective of the health system and health technology being assessed.

The 'Top 10' Challenges for Health Technology Assessment: INAHTA Viewpoint.

The International Network of Agencies for Health Technology Assessment (INAHTA) spans the globe as a network of 50 publicly-funded health technology assessment (HTA) agencies supporting health system decision making for 1.4 billion people in thirty countries. Agency members are non-profit HTA organizations that are part of, or directly support, regional or national governments. Recently, INAHTA surveyed its members to gather perspectives from agency leadership on the most important issues in HTA today. This paper describes the top 10 challenges identified by INAHTA members. Addressing these challenges requires a call for action from INAHTA member agencies and the many other actors involved in the HTA ecosystem. In opening this call for action, INAHTA will lead the way; however, a comprehensive undertaking from all players is needed to effectively address these challenges and to continue to evolve HTA in its role as a strong and effective contributor to health systems.

A Systematic Literature Review of Experiences of Professional Care and Support Among People Who Self-Harm.

Self-harm is an increasing phenomenon among young people, with potentially fatal outcomes. Patient's perceptions of treatment and support are poorly documented. The aim was to synthesise the experiences of those who self-harm, with special reference to professional care and support by family, friends, and the school system. A systematic review of the literature was conducted. Following retrieval of 1,623 abstracts, 14 studies were included in the final analysis, 11 of which are reported here. Two quantitative studies as well as 1 mixed method study on self-care could not be reported on here due to word limitations. Adult people who self-harm described the importance of quality in the caring relationship and a tailored care designed for each individual. There is a need for more studies into adolescents who self-harm but of importance is the adolescents' need for support from the adult world. A positive relationship between patient and healthcare professional can be crucial in motivating continued treatment of people who self-harm. A major priority is radical improvement in the attitudes of healthcare personnel.

INSIGHTS FROM THE FRONT LINES: A COLLECTION OF STORIES OF HTA IMPACT FROM INAHTA MEMBER AGENCIES.

This mini-theme contains six stories of health technology assessment (HTA) impact from member agencies of The International Network of Agencies for Health Technology Assessment (INAHTA), which were originally shared at the 2015 and 2016 INAHTA Congresses. The INAHTA impact story sharing is an innovative network activity where member agency representatives share experiences of HTA impact in a loosely structured story format. Through this process, members gain insights from other agencies on new ways of thinking about and approaching HTA impact assessment. A guide is provided to members to prepare their story, and the best story receives the David Hailey Award for Best Impact Story. This mini-theme contains stories of HTA impact from six member agencies in different parts of the world: the Health Assessment Division of the Ministry of Public Health (Uruguay), the Institute of Quality and Efficiency in Health Care (Germany), the Health Information and Quality Authority (Ireland), the Finnish Office for Health Technology Assessment (Finland), the Australian Safety and Efficacy Register of New Interventional Procedures-Surgical (Australia), and the Institut national d'excellence en santé et en services sociaux (Canada). Across the papers, common themes emerge about the importance of appropriate engagement of stakeholders and the broadening scope of HTA beyond reimbursement decision making.

INFLUENCE OF HEALTH TECHNOLOGY ASSESSMENT AND ITS MEASUREMENT.

OBJECTIVES: The aim of this study was to obtain information on methods used to measure health technology assessment (HTA) influence, decisions that were influenced, and outcomes linked to HTA. METHODS: Electronic databases were used to locate studies in which HTA influence had been demonstrated. Inclusion criteria were studies that reliably reported consideration by decision makers of HTA findings; comparative studies of technology use before and after HTA; and details of changes in policy, health outcomes, or research that could be credibly linked to an HTA. RESULTS: Fifty-one studies were selected for review. Settings were national (24), regional (12), both national and regional (3) hospitals (9), and multinational (3). The most common approach to appraisal of influence was review of policy or administrative decisions following HTA recommendations (51 percent). Eighteen studies (35 percent) reported interview or survey findings, thirteen (26 percent) reviewed administrative data, and six considered the influence of primary studies. Of 142 decisions informed by HTA, the most common types were on routine clinical practice (67 percent of studies), coverage (63 percent), and program operation (37 percent). The most frequent indications of HTA influence were on decisions related to resource allocation (59 percent), change in practice pattern (31 percent), and incorporation of HTA details in reference material (18 percent). Few publications assessed the contribution of HTA to changing patient outcomes. CONCLUSIONS: The literature on HTA influence remains limited, with little on longer term effects on practice and outcomes. The reviewed publications indicated how HTA is being used in different settings and approaches to measuring its influence that might be more widely applied, such as surveys and monitoring administrative data.

Does health technology assessment affect policy-making and clinical practice in Sweden?

OBJECTIVES: The aim of this study was to analyze whether health technology assessment (HTA) reports published by SBU have influenced decisions, guidelines, clinical practice, or research priorities in Sweden. METHODS: All twenty-six SBU reports between 2006 and 2010 were analyzed. For each project, we searched publications and documentation that reflected impact on decisions, guidelines, research or clinical practice. Written documentation, before-after surveys or register-based time series data were used when available. Based on a conceptual model and on the available evidence, we determined whether HTA reports had a high, moderate, or low impact. RESULTS: HTA reports influenced comprehensive decisions to a high or moderate degree. In the case of fortifying flour with folic acid to a high degree. In ten cases, HTA reports were the primary source of clinical guidelines developed by the National Board of Health and Welfare (NBHW) or professional associations. In the cases of dyspepsia and gastro-esophageal reflux, as well as mild head injury, the HTA reports had a high impact on clinical practice. It was also obvious from this review that research had been initiated as a result of the knowledge gaps identified by HTA reports. In three cases, we had no adequate documentation, suggesting that the impact of the HTA report had been low. CONCLUSIONS: Many interrelated forces change practice, but the cases presented here indicate that HTA reports have had a high impact on clinical guidelines, as well as a moderate or high impact on comprehensive decisions, the initiation of research and changes in clinical practice.

Developing the HTA core model for the online environment.

BACKGROUND: A framework for collaborative production and sharing of HTA information, the HTA Core Model, was originally developed within EUnetHTA in 2006-08. In this paper, we describe the further development of the Model to allow implementation and utilization of the Model online. The aim was to capture a generic HTA process that would allow effective use of the HTA Core Model and resulting HTA information while at the same time not interfering with HTA agencies' internal processes. METHODS: The work was coordinated by a development team in Finland, supported by an international expert group. Two pilot testing rounds were organized among EUnetHTA agencies and two extensive core HTA projects tested the tool in a real setting. The final work was also formally validated by a group of HTA agencies. RESULTS: The HTA Core Model Online--available at http://www.corehta.info--is a web site hosting a) a tool to allow electronic utilization of the HTA Core Model and b) a database of produced HTA information. While access to the HTA information is free to all, the production features are currently available to EUnetHTA member agencies only. A policy was crafted to steer the use of the Model and produced information. CONCLUSIONS: We have successfully enabled electronic use of the HTA Core Model and agreed on a policy for its utilization. The system is already being used in subsequent HTA projects within EUnetHTA Joint Action 2. Identified shortcomings and further needs will be addressed in subsequent development.

Preventing sexual abusers of children from reoffending: systematic review of medical and psychological interventions.

OBJECTIVE: To evaluate the effectiveness of current medical and psychological interventions for individuals at risk of sexually abusing children, both in known abusers and those at risk of abusing. DESIGN: Systematic review of interventions designed to prevent reoffending among known abusers and prevention for individuals at risk of sexually abusing children. Randomised controlled trials and prospective observational studies were eligible. Primary outcomes were arrests, convictions, breaches of conditions, and self reported sexual abuse of children after one year or more. RESULTS: After review of 1447 abstracts, we retrieved 167 full text studies, and finally included eight studies with low to moderate risk of bias. We found weak evidence for interventions aimed at reducing reoffending in identified sexual abusers of children. For adults, evidence from five trials was insufficient regarding both benefits and risks with psychological treatment and pharmacotherapy. For adolescents, limited evidence from one trial suggested that multisystemic therapy prevented reoffence (relative risk 0.18, 95% confidence interval 0.04 to 0.73); lack of adequate research prevented conclusions about effects of other treatments. Evidence was also inadequate regarding effectiveness of treatment for children with sexual behavioural problems in the one trial identified. Finally, we found no eligible research on preventive methods for adults and adolescents who had not sexually abused children but were at higher risk of doing so (such as those with paedophilic sexual preference). CONCLUSION: There are major weaknesses in the scientific evidence, particularly regarding adult men, the main category of sexual abusers of children. Better coordinated and funded high quality studies including several countries are urgently needed. Until conclusive evidence is available, realistic clinical strategies might involve reduction of specific risk factors for sex crimes, such as sexual preoccupation, in abusers at risk of reoffending.

Involvement of consumers in health technology assessment activities by Inahta agencies.

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.

Widening the debate? Consultation and participation in local health care planning in the English and Swedish health services.

In both English and Swedish health care, there is currently much interest in encouraging public consultation and participation in public service planning in order to improve quality, enhance local accountability, and help to inform and legitimize difficult decisions about health care priorities. This article explores the progress of local budget holders for health services in the two countries--primary care groups/trusts in England and county councils and municipalities in Sweden--in developing consultative and participative processes. Using secondary and primary research methods, the study identified much activity among English primary care groups/trusts, although with less certainty of outcome. In Sweden, initiatives were limited to a few county councils, were more distinctive, and in the case of one county council, resulted in the sustained channeling of citizens' views. In comparing and contrasting the approaches in the two countries, the authors note the importance of political cultures and institutional arrangements as well as, more generally, the complexities and challenges of consultation and participation in health care planning.