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Disease mongering is the selling of sickness that widens the boundaries of illness in order to grow markets for those who sell and deliver treatments. It is a process that [...]

Abstract Background Previous surveys of organizations that support the development of evidence-informed health policies have focused on organizations that produce clinical practice guidelines (CPGs) or undertake health technology assessments (HTAs). Only rarely have surveys focused at least in part on units that directly support the use of research evidence in developing health policy on an international, national, and state or provincial level (i.e., government support units, or GSUs) that are in some way successful or innovative or that support the use of research evidence in low- and middle-income countries (LMICs). Methods We drew on many people and organizations around the world, including our project reference group, to generate a list of organizations to survey. We modified a questionnaire that had been developed originally by the Appraisal of Guidelines, Research and Evaluation in Europe (AGREE) collaboration and adapted one version of the questionnaire for organizations producing CPGs and HTAs, and another for GSUs. We sent the questionnaire by email to 176 organizations and followed up periodically with non-responders by email and telephone. Results We received completed questionnaires from 152 (86%) organizations. More than one-half of the organizations (and particularly HTA agencies) reported that examples from other countries were helpful in establishing their organization. A higher proportion of GSUs than CPG- or HTA-producing organizations involved target users in the selection of topics or the services undertaken. Most organizations have few (five or fewer) full-time equivalent (FTE) staff. More than four-fifths of organizations reported providing panels with or using systematic reviews. GSUs tended to use a wide variety of explicit valuation processes for the research evidence, but none with the frequency that organizations producing CPGs, HTAs, or both prioritized evidence by its quality. Between one-half and two-thirds of organizations do not collect data systematically about uptake, and roughly the same proportions do not systematically evaluate their usefulness or impact in other ways. Conclusion The findings from our survey, the most broadly based of its kind, both extend or clarify the applicability of the messages arising from previous surveys and related documentary analyses, such as how the 'principles of evidence-based medicine dominate current guideline programs' and the importance of collaborating with other organizations. The survey also provides a description of the history, structure, processes, outputs, and perceived strengths and weaknesses of existing organizations from which those establishing or leading similar organizations can draw.

Abstract Background Only a small number of previous efforts to describe the experiences of organizations that produce clinical practice guidelines (CPGs), undertake health technology assessments (HTAs), or directly support the use of research evidence in developing health policy (i.e., government support units, or GSUs) have relied on interviews and then only with HTA agencies. Interviews offer the potential for capturing experiences in great depth, particularly the experiences of organizations that may be under-represented in surveys. Methods We purposively sampled organizations from among those who completed a questionnaire in the first phase of our three-phase study, developed and piloted a semi-structured interview guide, and conducted the interviews by telephone, audio-taped them, and took notes simultaneously. Binary or categorical responses to more structured questions were counted when possible. Themes were identified from among responses to semi-structured questions using a constant comparative method of analysis. Illustrative quotations were identified to supplement the narrative description of the themes. Results We interviewed the director (or his or her nominee) in 25 organizations, of which 12 were GSUs. Using rigorous methods that are systematic and transparent (sometimes shortened to 'being evidence-based') was the most commonly cited strength among all organizations. GSUs more consistently described their close links with policymakers as a strength, whereas organizations producing CPGs, HTAs, or both had conflicting viewpoints about such close links. With few exceptions, all types of organizations tended to focus largely on weaknesses in implementation, rather than strengths. The advice offered to those trying to establish similar organizations include: 1) collaborate with other organizations; 2) establish strong links with policymakers and stakeholders; 3) be independent and manage conflicts of interest; 4) build capacity; 5) use good methods and be transparent; 6) start small and address important questions; and 7) be attentive to implementation considerations. The advice offered to the World Health Organization (WHO) and other international organizations and networks was to foster collaborations across organizations. Conclusion The findings from our interview study, the most broadly based of its kind, extend to both CPG-producing organizations and GSUs the applicability of the messages arising from previous interview studies of HTA agencies, such as to collaborate with other organizations and to be attentive to implementation considerations. Our interview study also provides a rich description of organizations supporting the use of research evidence, which can be drawn upon by those establishing or leading similar organizations in LMICs.

Abstract Background Organizations have been established in many countries and internationally to support the use of research evidence by producing clinical practice guidelines, undertaking health technology assessments, and/or directly supporting the use of research evidence in developing health policy on an international, national, and state or provincial level. Learning from these organizations can reduce the need to 'reinvent the wheel' and inform decisions about how best to organize support for such organizations, particularly in low- and middle-income countries (LMICs). Methods We undertook a multi-method study in three phases – a survey, interviews, and case descriptions that drew on site visits – and in each of the second and third phases we focused on a purposive sample of those involved in the previous phase. We used the seven main recommendations that emerged from the advice offered in the interviews to organize much of the synthesis of findings across phases and methods. We used a constant comparative method to identify themes from across phases and methods. Results Seven recommendations emerged for those involved in establishing or leading organizations that support the use of research evidence in developing health policy: 1) collaborate with other organizations; 2) establish strong links with policymakers and involve stakeholders in the work; 3) be independent and manage conflicts of interest among those involved in the work; 4) build capacity among those working in the organization; 5) use good methods and be transparent in the work; 6) start small, have a clear audience and scope, and address important questions; and 7) be attentive to implementation considerations, even if implementation is not a remit. Four recommendations emerged for the World Health Organization (WHO) and other international organizations and networks: 1) support collaborations among organizations; 2) support local adaptation efforts; 3) mobilize support; and 4) create global public goods. Conclusion This synthesis of findings from a multi-method study, along with the more detailed findings from each of the three phases of the study (which are reported in the three following articles in the series), provide a strong basis on which researchers, policymakers, international organizations (and networks) like WHO can respond to the growing chorus of voices calling for efforts to support the use of research evidence in developing health policy.

Abstract Background Previous efforts to produce case descriptions have typically not focused on the organizations that produce research evidence and support its use. External evaluations of such organizations have typically not been analyzed as a group to identify the lessons that have emerged across multiple evaluations. Case descriptions offer the potential for capturing the views and experiences of many individuals who are familiar with an organization, including staff, advocates, and critics. Methods We purposively sampled a subgroup of organizations from among those that participated in the second (interview) phase of the study and (once) from among other organizations with which we were familiar. We developed and pilot-tested a case description data collection protocol, and conducted site visits that included both interviews and documentary analyses. Themes were identified from among responses to semi-structured questions using a constant comparative method of analysis. We produced both a brief (one to two pages) written description and a video documentary for each case. Results We conducted 51 interviews as part of the eight site visits. Two organizational strengths were repeatedly cited by individuals participating in the site visits: use of an evidence-based approach (which was identified as being very time-consuming) and existence of a strong relationship between researchers and policymakers (which can be challenged by conflicts of interest). Two organizational weaknesses – a lack of resources and the presence of conflicts of interest – were repeatedly cited by individuals participating in the site visits. Participants offered two main suggestions for the World Health Organization (and other international organizations and networks): 1) mobilize one or more of government support, financial resources, and the participation of both policymakers and researchers; and 2) create knowledge-related global public goods. Conclusion The findings from our case descriptions, the first of their kind, intersect in interesting ways with the messages arising from two systematic reviews of the factors that increase the prospects for research use in policymaking. Strong relationships between researchers and policymakers bodes well given such interactions appear to increase the prospects for research use. The time-consuming nature of an evidence-based approach, on the other hand, suggests the need for more efficient production processes that are 'quick and clean enough.' Our case descriptions and accompanying video documentaries provide a rich description of organizations supporting the use of research evidence, which can be drawn upon by those establishing or leading similar organizations, particularly in low- and middle-income countries.

While a large part of the world's population faces the problems of underdiagnosis and undertreatment, it is apparent that a 'modern epidemic' of overdiagnosis afflicts high-income countries [1], with tangible [...]