Involving citizens in priority setting for public health research: Implementation in infection research

Background Public sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research. Method A scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three-hour focus group exploring views on engagement in strategic decisions and in-depth evaluation of the tool. Results 188/491(38%) prioritized funding research into drug-resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of “non-experts” as decision makers were expressed. Conclusion Voting scenarios can be used to collect, en-masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats

Reflections on the Cost of Low-Cost Whole Genome Sequencing: Framing the Health Policy Debate

The cost of whole genome sequencing is dropping rapidly. There has been a great deal of enthusiasm about the potential for this technological advance to transform clinical care. Given the interest and significant investment in genomics, this seems an ideal time to consider what the evidence tells us about potential benefits and harms, particularly in the context of health care policy. The scale and pace of adoption of this powerful new technology should be driven by clinical need, clinical evidence, and a commitment to put patients at the centre of health care policy

A Qualitative Pilot Study on Text Messaging Intervention for Weight Loss in Adults

Background Overweight and obesity are major risk factors for chronic illnesses such as cancer, diabetes and cardiovascular diseases. Newfoundland and Labrador (NL) has the highest rates of overweight and obesity of all provinces in Canada. Mobile health or mhealth in the form of text messaging is a potential solution to addressing the high overweight and obesity rates of the province. In this study, we explored NL residents’ perceptions of text message programs as an effective intervention for weight loss. Methods This study utilized a descriptive qualitative design through in-person semi-structured interviews with adults with previous or current experience in a weight loss program. Participants were recruited through recurrent postings on a biweekly school newsletter and study posters throughout the medical school at Memorial University. The data were analyzed using deductive thematic analysis. Results This pilot study included two participants, both women. The themes that arose in this study included past positive experiences, past negative experiences, barriers for weight loss, motivation for weight loss, attitudes about text messaging-based weight loss interventions and specific suggestions for future app development. The latter included text message content with reminders and encouragement, group messages, interactive and personal text messages and specific goal-setting in the app. Interpretation There were mixed attitudes towards using a text messaging based intervention. Findings revealed motivating factors of accountability, seeing positive physical bodily changes and goal-setting. Both participants had similar suggestions regarding future app development that involved creating a personalized and interactive experience for the users and to include a sense of community and communication across users of the app

Exploring the connections between economic development and post-secondary education in Newfoundland and Labrador : a case study

Research suggests there is a natural connection between economic development and post-secondary education. Post-secondary educational institutions are viewed as sources of highly skilled graduates ready to work in a global economy, places of research and development for the benefit of society, and as meaningful contributors to the community. This thesis explores the nature of the relationship between public post-secondary education and economic development in Newfoundland and Labrador using a case study method. The primary research question is: What role does economic development play in the implementation of the mandates of Memorial University of Newfoundland and College of the North Atlantic? -- By using a case study method, the two public post-secondary institutions in the province - College of the North Atlantic and Memorial University of Newfoundland - and the sole federal agency responsible for economic development in the Atlantic region, the Atlantic Canada Opportunities Agency (ACOA), were used as the subjects. Interviews were conducted with 12 senior administrators within the institutions and affiliated arms-length organizations and institutes involved in economic development and/or research and development as well as a representative from the provincial Corporate Services Branch for the Departments of Education and Youth Services and Post-Secondary Education. Government of Canada documents, such as policy and discussion papers, and literature pertaining to the topic were also analyzed as part of the research. -- While the secondary research was used to create a composite overview of the current issues related to economic development and post-secondary education in Canada, the interviews allowed the researcher to probe the nature of the relationship between the two and the issues pertaining to that relationship as it related to the institutions being studied, and to explore possibilities to enhance the relationships. -- This case study found that there are real and meaningful connections between economic development and post-secondary education and that the relationships between Memorial University of Newfoundland and College of the North Atlantic with ACOA is a necessary and positive one; However, many of the interviewees noted areas where the relationships could be improved, the result being a more systematic approach to economic development within the two post-secondary institutions

Presenting life with cystic fibrosis: a Q-methodological approach to developing balanced, experience-based prenatal screening information

Background: Cystic fibrosis (CF) is one of the most common life-threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what information to deliver about complex genetic conditions to support informed screening decisions can be challenging for health professionals. Objective: To solicit views from those with personal experience with CF on which aspects of the condition they consider most important to include in prenatal screening materials. Methods: Q-methodology; an approach to systematically explore variations in viewpoint that combines factor analytic techniques with qualitative approaches to pattern interpretation. Setting and Participants: Twelve adults with CF and 18 parents of affected children were recruited from a regional centre in the UK. Results: Five distinct viewpoints on the items most and least important to include in screening information were identified: Factor 1 the normality of life with CF and increasing life expectancy; Factor 2 the hardships and reduced lifespan. Factor 3 medical interventions and the importance of societal support. Factor 4 longer-term consequences of CF. Factor 5 the ability to adjust to the condition. Discussion: The identification of five different views on what represented the most and least important information to include about CF highlights the challenge of portraying a complex genetic condition in a balanced and accurate manner. Novel ways in which Q-methodology findings can be used to meet this challenge are presented

What do we really know about the appropriateness of radiation emitting imaging for low back pain in primary and emergency care? A systematic review and meta-analysis of medical record reviews

Background Since 2000, guidelines have been consistent in recommending when diagnostic imaging for low back pain should be obtained to ensure patient safety and reduce unnecessary tests. This systematic review and meta-analysis was conducted to determine the pooled proportion of CT and x-ray imaging of the lumbar spine that were considered appropriate in primary and emergency care. Methods Pubmed, CINAHL, The Cochrane Database of Systematic Reviews and Embase were searched for synonyms of “low back pain”, “guidelines”, and “adherence” that were published after 2000. Titles, abstracts, and full texts were reviewed for inclusion with forward and backward tracking on included studies. Included studies had data extracted and synthesized. Risk of bias was performed on all studies, and GRADE was performed on included studies that provided data on CT and x-ray separately. A random effect, single proportion meta-analysis model was used. Results Six studies were included in the descriptive synthesis, and 5 studies included in the meta-analysis. Five of the 6 studies assessed appropriateness of x-rays; two of the six studies assessed appropriateness of CTs. The pooled estimate for appropriateness of x-rays was 43% (95% CI: 30%, 56%) and the pooled estimate for appropriateness of CTs was 54% (95% CI: 51%, 58%). Studies did not report adequate information to fulfill the RECORD checklist (reporting guidelines for research using observational data). Risk of bias was high in 4 studies, moderate in one, and low in one. GRADE for x-ray appropriateness was low-quality and for CT appropriateness was very-low-quality. Conclusion While this study determined a pooled proportion of appropriateness for both x-ray and CT imaging for low back pain, there is limited confidence in these numbers due to the downgrading of the evidence using GRADE. Further research on this topic is needed to inform our understanding of x-ray and CT appropriateness in order to improve healthcare systems and decrease patient harms

Responsibility and identity and genomic sequencing : a comparison of published recommendations and patient perspectives on accepting or declining incidental findings

Background The use of genomic sequencing techniques is increasingly being incorporated into mainstream health care. However, there is a lack of agreement on how “incidental findings” (IFs) should be managed and a dearth of research on patient perspectives. Methods In‐depth qualitative interviews were carried out with 31 patients undergoing genomic sequencing at a regional genetics service in England. Interviews explored decisions around IFs and were comparatively analyzed with published recommendations from the literature. Results Thirteen participants opted to receive all IFs from their sequence, 12 accepted some and rejected others, while six participants refused all IFs. The key areas from the literature, (a) genotype/phenotype correlation, (b) seriousness of the condition, and (c) implications for biological relatives, were all significant; however, patients drew on a broader range of social and cultural information to make their decisions. Conclusion This study highlights the range of costs and benefits for patients of receiving IFs from a genomic sequence. While largely positive views toward the dissemination of genomic data were reported, ambivalence surrounding genetic responsibility and its associated behaviors (e.g., duty to inform relatives) was reported by both IF decliners and accepters, suggesting a need to further explore patient perspectives on this highly complex topic area

Breast cancer surgical treatment choices in Newfoundland and Labrador, Canada: Patient and surgeon perspectives

Background. Breast cancer remains the second-leading cause of cancer death among Canadian women. Treatment for breast cancer often includes surgery. Many women have a choice between mastectomy (MT; removal of the entire breast) or breast conserving surgery (BCS; removal of the tumour and some noncancerous breast tissue) followed by radiation. However, Newfoundland and Labrador consistently has a higher rate of mastectomies than the rest of Canada. In this project, we aim to better understand that trend. Design and methods. A multi-method design was chosen. Surgical treatment data kept by the province will be examined to describe the number and types of breast cancer surgeries over time. Second, we will hold focus groups with women around the province who have made surgical treatment choices to explore influences on their decisions. Finally, semi-structured interviews with breast cancer surgeons and surgical residents will explore their opinions on surgical treatment choices. Expected impact for public health. Cancer treatment choices are complex decisions, affected by clinical, demographic and social variables. Understanding why women from Newfoundland and Labrador have the highest rate of mastectomy in Canada is critical to ensure they are receiving appropriate screening and care. Greater understanding of the influences on women’s surgical choices may encourage informed decisions amongst women and physicians and promote active communication about treatment, benefits relevant to all jurisdictions and health authorities. Further, if factors such as geographic proximity to treatment facilities are associated with treatment decisions, this information is important for public health screening and service planners

Patient education materials for non-specific low back pain and sciatica: a protocol for a systematic review and meta-analysis

Introduction Low back pain accounts for more disability than any other musculoskeletal condition and is associated with severe economic burden. Patients commonly present with negative beliefs about low back pain and this can have detrimental effects on their health outcomes. Providing evidence-based, patient-centred education that meets patient needs could help address these negative beliefs and alleviate the substantial low back pain burden. The primary aim of this review is to investigate the effectiveness of patient education materials on immediate process, clinical and health system outcomes. Methods and analysis The search strategy was developed in collaboration with a librarian and systematic searches will be performed in MEDLINE, EMBASE, CINAHL, PsycINFO and SPORTDiscus. We will also search trial registries and grey literature through the OpenGrey database. Study selection will include a title and abstract scan and full-text review by two authors. Only randomised controlled trials will be included in this review. Trials must include patients with low back pain or sciatica and investigate educational interventions with at least one of the following contrasts: (1) education alone versus no intervention; (2) education alone versus another intervention; (3) education in addition to another intervention versus the same intervention with no education. Data extraction, risk of bias and grading of the quality of evidence will be performed independently by two reviewers. Risk of bias will be assessed using the PEDro scale, and the quality of evidence will be assessed with the Grades of Recommendation, Assessment, Development and Evaluation approach. A random-effects model will be used for each contrast, and results will be pooled if the participants, interventions, and outcomes are homogeneous. If heterogeneity is high (I2 >75%), we will evaluate the magnitude and direction of the differences in effect sizes across studies to determine if it remains reasonable to pool the results. Analyses of acute and subacute low back pain (less than 12 weeks duration) will be performed separately from chronic low back pain (12 weeks or greater duration). Likewise, analyses of short-term (less than 6 months) and long-term (6 months or greater) follow-up will be performed separately. Subgroup analyses will be performed on non-specific low back pain, sciatica and mixed populations