Gail MacKean

Bridging the divide between families and health professionals' perspectives on family-centred care

Objectives  To describe and discuss key findings from a recent research project that challenge an increasingly prevalent theme, apparent in both family‐centred care research and practice, of conceptualizing family‐centred care as shifting care, care management, and advocacy responsibilities to families. The purpose of the research, from which these findings emerged, was to develop a conceptualization of family‐centred care grounded in the experiences of families and direct health‐care providers.

Will it make a difference if I show up and share? A citizens' perspective on improving public involvement processes for health system decision-making

Introduction: Health policy decision-makers are grappling with increasingly complex and ethically controversial decisions at a time when citizens are demanding more involvement in these decision processes. Objectives: To assess and revise a set of guiding principles for the design of public involvement processes generated from a synthesis of public participation design and evaluation frameworks that can be used to inform the design and evaluation of future public participation processes in the health sector. Methods: Six focus groups held in five Canadian provinces comprising citizens with considerable experience of public participation processes. Results and discussion: Our findings suggest that citizen participants are highly critical of, and discerning about, their public participation experiences. Yet, they are optimistic and determined to contribute in meaningful ways to future public policy processes. They are clear about where improvements are needed and give top priority to what information is shared, and how, among participants and decision-makers. The views of experienced citizens mapped well onto most of the prior principles of public involvement with a few modifications. First, participants gave greater emphasis to the content and balance of information for the purposes of building trust and credibility between citizens and decision-makers. Second, participants viewed themselves, as well as decision-makers, as sources of information to be shared through the consultation process. Finally, participants stressed the importance of getting the information and communication principles right over addressing all other principles.

Health technology reassessment: The art of the possible

Background: Health technology reassessment (HTR) is “a structured, evidence-based assessment of the clinical, social, ethical, and economic effects of a technology currently used in the healthcare system, to inform optimal use of that technology in comparison to its alternatives.” The purpose of this study is to describe the key themes in the context of current HTR activities and propose a way forward for this newly emerging field. Methods: Data were gathered from a workshop held as part of the 2012 Canadian Agency for Drugs and Technology in Health (CADTH) symposium. The workshop consisted of two panel presentations followed by discussion; data gathered, including presentations and rich audience discussion transcripts, were analyzed for key themes emerging in the field of HTR using constant comparative analysis. Results: The language chosen to describe HTR will set the tone for engagement. The identification of champions at multiple levels and political will are essential. Key lessons from international experience are: disinvestment is difficult, focus on clinical areas not specific technologies, identify clear goals of the HTR agenda. Six key themes were identified to move the HTR agenda forward: emphasize integration over segregation, focus on development of HTR methods and processes, processes are context-specific but lessons must be shared, build capacity in synergistic interdisciplinary fields, develop meaningful stakeholder engagement, strengthen postimplementation monitoring and evaluation. Conclusions: To move this field forward, we must continue to build on international experiences with a focus on developing novel methodological approaches to generating, incorporating, and implementing evidence into policy and practice.

Current status of health technology reassessment of non-drug technologies: survey and key informant interviews

BackgroundHealth Technology Reassessment (HTR) is a structured, evidence-based assessment of the clinical, social, ethical and economic effects of a technology currently used in the health care system, to inform optimal use of that technology in comparison to its alternatives. Little is known about current international HTR practices. The objective of this research was to summarize experience-based information gathered from international experts on the development, initiation and implementation of a HTR program.MethodsA mixed methods approach, using a survey and in-depth interviews, was adopted. The survey covered 8 concepts: prioritization/identification of potentially obsolete technologies; program development; implementation; mitigation; program championing; stakeholder engagement; monitoring; and reinvestment. Members of Health Technology Assessment International (HTAi) and the International Network of Agencies for Health Technology Assessment (INAHTA) formed the sampling frame. Participation was solicited via email and the survey was administered online using SurveyMonkey. Survey results were analyzed using descriptive statistics. To gather more in-depth knowledge, semi-structured interviews were conducted among organizations with active HTR programs. Interview questions were developed using the same 8 concepts. The hour-long interviews were recorded, transcribed and analyzed using constant comparative analysis.ResultsNinety-five individuals responded to the survey: 49 were not discussing HTR, 21 were beginning to discuss HTR, nine were imminently developing a program, and 16 participants had programs and were completing reassessments. The survey results revealed that methods vary widely and that although HTR is a powerful tool, it is currently not being used to its full potential. Of the 16 with active programs, nine agreed to participate in follow-up interviews. Interview participants identified early and extensive stakeholder engagement as the most important factors for success. A lack of top-down support and financial and human resources are inhibiting program development.DiscussionHTR is in its infancy. Although HTRs are being conducted, there are no standardized approaches. However, much can be learned from current international work. Future work should focus on developing a comprehensive methodology, reporting the processes of reassessments and sharing successes and challenges in a common platform.

Organizational impact of evidence-informed decision making training initiatives: a case study comparison of two approaches

BackgroundThe impact of efforts by healthcare organizations to enhance the use of evidence to improve organizational processes through training programs has seldom been assessed. We therefore endeavored to assess whether and how the training of mid- and senior-level healthcare managers could lead to organizational change.MethodsWe conducted a theory-driven evaluation of the organizational impact of healthcare leaders’ participation in two training programs using a logic model based on Nonaka’s theory of knowledge conversion. We analyzed six case studies nested within the two programs using three embedded units of analysis (individual, group and organization). Interviews were conducted during intensive one-week data collection site visits. A total of 84 people were interviewed.ResultsWe found that the impact of training could primarily be felt in trainees’ immediate work environments. The conversion of attitudes was found to be easier to achieve than the conversion of skills. Our results show that, although socialization and externalization were common in all cases, a lack of combination impeded the conversion of skills. We also identified several individual, organizational and program design factors that facilitated and/or impeded the dissemination of the attitudes and skills gained by trainees to other organizational members.ConclusionsOur theory-driven evaluation showed that factors before, during and after training can influence the extent of skills and knowledge transfer. Our evaluation went further than previous research by revealing the influence—both positive and negative—of specific organizational factors on extending the impact of training programs.

Patients’ perspectives can be integrated in health technology assessments: an exploratory analysis of CADTH Common Drug Review

Plain language summaryIn Canada, the CADTH Common Drug Review helps ensure that scarce health care resources are used to fund the most effective drugs. Clinicians, researchers, payers, and patients all have important, but potentially different, ideas on what should be considered, to determine a drug’s value. Since 2010, CADTH has invited patient groups to contribute their perspectives to the Common Drug Review. We explored whether, and how, insights offered by patient groups are integrated into assessment reports and Recommendations by the CADTH Canadian Drug Expert Committee.After examining 30 completed drug assessments, we found that:Patient insights are used by CADTH reviewers to frame an assessment and are used by the expert committee to interpret the evidence.Drug trials do not always measure outcomes that patients consider important.Survival, symptom relief, the process of recovery, and maintaining health are all important aspects to consider when determining value during health technology assessments.AbstractBackground Since 2010, Canadian patient groups have contributed to the CADTH Common Drug Review (CDR). CADTH conducts health technology assessments of new drugs to support publicly funded drug plans’ reimbursement decisions. We explored whether, and how, patient insights were integrated into assessment reports and Recommendations by the CADTH Canadian Drug Expert Committee (CDEC). Methods We descriptively analyzed 30 consecutive assessments. One researcher identified a set of issues, insights, and desired treatment outcomes provided by patient groups for each included drug assessment. We tracked the presence of each identified patient insight in the relevant assessment protocol, in clinical trials as reported in the assessment, and in the CDEC Recommendations. Additionally, patient insights were categorized by topic and grouped into a three-tier framework to explore the observed juxtaposition between immediate treatment outcomes as seen in clinical trials and the insights from patients living with a chronic condition. Results In 30 drug assessments, 119 patient insights were identified. Of these insights, 89 were included in assessment protocols; 61 in reported clinical trial data; and 67 insights were reflected upon within the CDEC Recommendations. Patient insights within the first framework tier (health status achieved) were frequently included in all aspects of CDR assessments. Within the second tier (progress of recovery), although two-thirds of patient insights were included in protocols, only one-third was reflected in reported trial data or in CDEC Recommendations. Insights within the third tier, which address the long-term consequences of illness and treatment, were even less frequently addressed in all aspects of CDR assessments. Conclusions Patients’ perspectives need not be “considered” in isolation. Patient insights are used by CADTH reviewers to frame an assessment and used by CDEC to interpret the evidence. As health technology assessments should address the indirect and unintended consequences of a technology, as well as its direct and intended effects, drug assessments should consider the progress of recovery and sustainability of health, in addition to survival and immediate health achieved.

Perspectives on neurological patient registries: a literature review and focus group study

BackgroundPatient registries represent a well-established methodology for prospective data collection with a wide array of applications for clinical research and health care administration. An examination and synthesis of registry stakeholder perspectives has not been previously reported in the literature.MethodsTo inform the development of future neurological registries we examined stakeholder perspectives about such registries through a literature review followed by 3 focus groups comprised of a total of 15 neurological patients and 12 caregivers.Results(1) Literature review: We identified 6,435 abstracts after duplicates were removed. Of these, 410 articles underwent full text review with 24 deemed relevant to perspectives about neurological and non-neurological registries and were included in the final synthesis. From a patient perspective the literature supports altruism, responsible use of data and advancement of research, among others, as motivating factors for participating in a patient registry. Barriers to participation included concerns about privacy and participant burden (i.e. extra clinic visits and associated costs). (2) Focus groups: The focus groups identified factors that would encourage participation such as: having a clear purpose; low participant burden; and being well-managed among others.ConclusionsWe report the first examination and synthesis of stakeholder perspectives on registries broadly with a specific focus on neurological patient registries. The findings of the broad literature review were congruent with the neurological patient and caregiver focus groups. We report common themes across the literature and the focus groups performed. Stakeholder perspectives need to be considered when designing and operating patient registries. Emphasizing factors that promote participation and mitigating barriers may enhance patient recruitment.

Development and testing of a framework for assessing the effectiveness of health promotion

SummaryObjectives: The purpose was to develop and test a framework for assessing the overall effectiveness of health promotion in one Canadian province. Methods: The project relied on expert opinion and consensus. A multidisciplinary team developed a Project Description Framework and a Health Promotion Evaluation Framework. Two sets of inclusion criteria were developed for selecting projects to be assessed using the Framework. The sampling frame was all health promotion projects starting in Alberta in January 1993 or later for which a written program evaluation could be obtained. Of 180 project reports, 91 met the first set and 35 met the remaining inclusion criteria. Two research associates independently used the Project Description Framework. Three associates independently applied the inclusion criteria. Consensus was reached in all cases. Research team members used the Health Promotion Evaluation Framework to assess the 35 projects and to comment on its utility and any gaps identified. Results: A framework for assessing the effectiveness of health promotion was developed and tested. Conclusion: This framework is a useful tool as evidenced by the review that was obtained and subsequent applications.

Experiences and attitudes toward risk of recurrence testing in women with breast cancer: a systematic review.

Recurrence tests, such as Adjuvant! Online and Oncotype DX, can be used to determine an individual’s risk of developing recurrent cancer. These technologies are useful for helping health care practitioners make treatment recommendations. With increasing use, it is necessary to consider patients’ experience with and attitudes toward risk of recurrence testing. Factors such as anxiety, influence on decision making, confidence in results, and satisfaction with testing are important to consider. To understand experiences and attitudes toward risk of recurrence testing, from the perspective of women who have used these technologies following a breast cancer diagnosis. A systematic review was completed. Eight multidisciplinary electronic databases, including MEDLINE, PsycINFO, CINAHL, and ERIC, were searched from 1950 to December 17, 2012. Abstracts and full-text papers were screened for inclusion, in duplicate, based on established criteria. Recurrent themes and key concepts were identified and analyzed. One-thousand and twenty-two abstracts were retrieved, and fifty-one proceeded to full-text review. Ten studies reporting on eight populations were included in this review. Key themes that emerged from the literature include: experience with the testing process; influence testing has on treatment; and comprehension of results. The literature suggests that testing for breast cancer recurrence can have a negative impact on women; poor comprehension of test results, and anxiety/distress were the most frequently cited reasons for a negative experience. Despite these drawbacks, women consistently reported that they would recommend testing to others. The literature on this topic is limited, and heterogeneous. The available literature suggests that women are generally satisfied with risk of recurrence testing for breast cancer. Potential drawbacks of risk of recurrence testing include anxiety and comprehension of test results. Additional high-quality research on women’s experiences with risk of recurrence testing for breast cancer would improve the evidence base, and would allow stronger conclusions to be drawn.

Repetitive Transcranial Magnetic Stimulation for Treatment-Resistant Depression in Adult and Youth Populations: A Systematic Literature Review and Meta-Analysis.

BACKGROUND Between 30% and 60% of individuals with major depressive disorder will have treatment-resistant depression (TRD): depression that does not subside with pharmaceutical treatment. Repetitive transcranial magnetic stimulation (rTMS) is an emerging treatment for TRD. OBJECTIVE To establish the efficacy and optimal protocol for rTMS among adults and youth with TRD. DATA SOURCES Two systematic reviews were conducted: one to determine the efficacy of rTMS for adults with TRD and another to determine the effectiveness of rTMS for youth with TRD. For adults, MEDLINE, Cochrane Central Register of Controlled Trials, PubMed, EMBASE, PsycINFO, Cochrane Database of Systematic Reviews, and Health Technology Assessment Database were searched from inception until January 10, 2014 with no language restrictions. Terms aimed at capturing the target diagnosis, such as depression and depressive disorder, were combined with terms describing the technology, such as transcranial magnetic stimulation and rTMS. Results were limited to studies involving human participants and designed as a randomized controlled trial. For youth, the search was altered to include youth only (aged 13-25 years) and all study designs. When possible, meta-analysis of response and remission rates was conducted. STUDY SELECTION Seventy-three articles were included in this review: 70 on adult and 3 on youth populations. RESULTS Meta-analysis comparing rTMS and sham in adults found statistically significant results favoring rTMS for response (RR: 2.35 [95% CI, 1.70-3.25]) and remission (RR: 2.24 [95% CI, 1.53-3.27]). No statistically significant differences were found when comparing high- and low-frequency, unilateral and bilateral, low- and high-intensity rTMS or rTMS and electroconvulsive therapy (ECT). While meta-analysis of results from the youth literature was not possible, the limited evidence base suggests that rTMS may be effective for treating TRD in youth. CONCLUSIONS The evidence available on the use of rTMS for adults with TRD indicates that rTMS is approximately twice as effective as a sham procedure, although the optimal rTMS protocol remains unclear. Evidence also indicates that rTMS is as effective as ECT and appears promising as a treatment for youth with TRD; however, the evidence base is underdeveloped.