Patients', clinicians' and the research communities' priorities for treatment research: there is an important mismatch.
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SUBMITTER: Crowe S
PROVIDER: S-EPMC5598091 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:ObjectiveThis study aims to prioritise the themes identified from the three gap analyses performed by a combination of scientists, clinicians, patients and members of the public to determine areas in breast cancer care where research is lacking. We also aimed to compare the priorities of areas of agreed research need between patients, the public, clinicians and scientists.DesignA cross-section of patients, public, clinicians and scientists completed a prioritisation exercise to rank the identified themes where research is lacking in breast cancer care.ParticipantsPatients, clinicians and scientists who have experienced, managed or worked in the field of breast cancer and members of the public.MethodsThe research areas identified in the Breast Cancer Campaign, Association of Breast Surgery and North West Breast Research Collaborative gap analyses were outlined as 22 themes in lay terminology. Patients, members of the public, clinicians and scientists were invited to complete the prioritisation exercise, on paper or electronically, ranking the themes from 1 to 22. Comparisons were made with arithmetic mean ranking.ResultsOf the 510 prioritisation exercises completed, 179 (35%) participants were patients, 162 (32%) public, 43 (8%) scientists and 122 (24%) clinicians. The theme ranked of highest priority overall was 'better prevention' (arithmetic mean rank 6.4 (SE 0.23)). 'Better prevention' was ranked top or second by patients, public and clinicians (7 (0.39), 4.7 (0.34) and 6.8 (0.5), respectively), however, scientists ranked this as their sixth most important factor (7.7 (0.92)). The public and clinicians had good agreement with patients (r=0.84 and r=0.75, respectively), whereas scientists had moderate agreement with patients (r=0.65). Certain themes were ranked significantly differently by participant groups. Compared with clinicians, patients prioritised research into 'alternative to mammograms', 'diagnostic (cancer) blood test' and 'rare cancers' (OR 2.1 (95% CI 1.3 to 3.5), p=0.002, OR 2.1 (95% CI 1.3 to 3.5), p=0.004 and OR 1.7 (95% CI 1.1 to 2.8), p=0.03). Compared with scientists, patients deprioritised 'better laboratory models' (OR 0.4 (95% CI 0.2 to 0.8), p=0.01).ConclusionThis study demonstrates that patients, public, clinicians and scientists have different research priorities, with scientists being a particular outlier. This highlights the need to ensure the engagement of patients and public in research funding prioritisation decisions.
| S-EPMC11367287 | biostudies-literature
Project description:It is critically important to define disease-specific research priorities to better allocate limited resources. There is growing recognition of the value of involving patients and caregivers, as well as expert clinicians in this process. To our knowledge, this has not been done this way for kidney cancer. Using the transparent and inclusive process established by the James Lind Alliance, the Kidney Cancer Research Network of Canada (KCRNC) sponsored a collaborative consensus-based priority-setting partnership (PSP) to identify research priorities in the management of kidney cancer. The final result was identification of 10 research priorities for kidney cancer, which are discussed in the context of current initiatives and gaps in knowledge. This process provided a systematic and effective way to collaboratively establish research priorities with patients, caregivers, and clinicians, and provides a valuable resource for researchers and funding agencies.
| S-EPMC5962944 | biostudies-literature
Project description:Policy Points Engaging and involving underrepresented communities when setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. Groups and individuals from minority and underserved communities strongly prioritized child health and mental health research, often choosing to invest at the highest possible level. Groups consisting of predominantly Native American or Arab American participants invested in culture and beliefs research at the highest level, while many groups did not select it at all. The priority given to culture and beliefs research by these groups illustrates the importance of paying special attention to unique preferences, and not just commonly held views, when getting public input on spending priorities for research.ContextA major contributor to health disparities is the relative lack of resources-including resources for science-allocated to address the health problems of those with disproportionately greater needs. Engaging and involving underrepresented communities in setting research priorities could make the scientific research agenda more equitable, more just, and more responsive to their needs and values. We engaged minority and underserved communities in informed deliberations and report here their priorities for health research.MethodsAcademic-community partnerships adapted the simulation exercise CHAT for setting health research priorities. We had participants from minority and medically underserved communities (47 groups, n = 519) throughout Michigan deliberate about health research priorities, and we used surveys and CHAT software to collect the demographic characteristics and priorities selected by individuals and groups.FindingsThe participants ranged in age (18 to 88), included more women than men, and were overrepresented by minority groups. Nearly all the deliberating groups selected child health and mental health research (93.6% and 95.7%), and most invested at the highest level. Aging, access, promote health, healthy environment, and what causes disease were also prioritized by groups. Research on mental health and child health were high priorities for individuals both before and after group deliberations. Access was the only category more likely to be selected by individuals after group deliberation (77.0 vs 84.0%, OR = 1.63, p = .005), while improve research, health policy, and culture and beliefs were less likely to be selected after group deliberations (all, p < .001). However, the level of investment in many categories changed after the group deliberations. Participants identifying as Black/African American were less likely to prioritize mental health research, and those of Other race were more likely to prioritize culture and beliefs research.ConclusionsMinority and medically underserved communities overwhelmingly prioritized mental health and child health research in informed deliberations about spending priorities.
| S-EPMC6287077 | biostudies-literature
Project description:OBJECTIVES:To identify studies that have investigated the health outcome and treatment priorities of patients with multimorbidity, clinicians or both, in order to assess whether the priorities of the two groups are in alignment, or whether a disparity exists between the priorities of patients with multimorbidity and clinicians. DESIGN:Systematic review. DATA SOURCES:MEDLINE, EMBASE, CINHAL and Cochrane databases from inception to May 2019 using a predefined search strategy, as well as reference lists containing any relevant articles, as per Preferred Reporting Items for Systematic Reviews and Meta-Analyses and Cochrane guidelines. ELIGIBILITY CRITERIA:We included studies reporting health outcome and treatment priorities of adult patients with multimorbidity, defined as suffering from two or more chronic conditions, or of clinicians in the context of multimorbidity or both. There was no restriction by study design, and studies using quantitative and/or qualitative methodologies were included. DATA SYNTHESIS:We used a narrative synthesis approach to synthesise the quantitative findings, and a meta-ethnography approach to synthesise the qualitative findings. RESULTS:Our search identified 24 studies for inclusion, which comprised 12 quantitative studies, 10 qualitative studies and 2 mixed-methods studies. Twelve studies reported the priorities of both patients and clinicians, 10 studies reported the priorities of patients and 2 studies reported the priorities of clinicians alone. Our findings have shown a mostly low level of agreement between the priorities of patients with multimorbidity and clinicians. We found that prioritisation by patients was mainly driven by their illness experiences, while clinicians focused on longer-term risks. Preserving functional ability emerged as a key priority for patients from across our quantitative and qualitative analyses. CONCLUSION:Recognising that there may be a disparity in prioritisation and understanding the reasons for why this might occur, can facilitate clinicians in accurately eliciting the priorities that are most important to their patients and delivering patient-centred care. PROSPERO REGISTRATION NUMBER:CRD42018076076.
| S-EPMC7045037 | biostudies-literature
Project description:OBJECTIVES:The overall goal of this study is to identify priorities for cardiovascular (CV) health research that are important to patients and clinician-researchers. We brought together a group of CV patients and clinician-researchers new to patient-oriented research (POR), to build a multidisciplinary POR team and form an advisory committee for the Libin Cardiovascular Institute of Alberta. DESIGN:This qualitative POR used a participatory health research paradigm to work with participants in eliciting their priorities. Therefore, participants were involved in priority setting, and analysis of findings. Participants also developed a plan for continued engagement to support POR in CV health research. SETTING:Libin Cardiovascular Institute of Alberta, Cumming School of Medicine, University of Calgary, Canada. PARTICIPANTS:A total of 23 participants, including patients and family caregivers (n=12) and clinician-researchers (n=11). RESULTS:Participants identified barriers and facilitators to POR in CV health (lack of awareness of POR and poor understanding on the role of patients) and 10 research priorities for improving CV health. The CV health research priorities include: (1) CV disease prediction and prevention, (2) access to CV care, (3) communication with providers, (4) use of eHealth technology, (5) patient experiences in healthcare, (6) patient engagement, (7) transitions and continuity of CV care, (8) integrated CV care, (9) development of structures for patient-to-patient support and (10) research on rare heart diseases. CONCLUSIONS:In this study, research priorities were identified by patients and clinician-researchers working together to improve CV health. Future research programme and projects will be developed to address these priorities. A key output of this study is the creation of the patient advisory council that will provide support and will work with clinician-researchers to improve CV health.
| S-EPMC7044837 | biostudies-literature
Project description:BackgroundRetinoblastoma is a childhood cancer of the eye that can have lifelong effects on patients and families. The purpose of this study was for people affected by retinoblastoma, clinicians and researchers to jointly determine the top 10 retinoblastoma research priorities in Canada.MethodsAn adaptation of the James Lind Alliance Priority Setting Partnership (PSP) methodology was employed. People were invited to participate in any stage of the priority-setting process if they were a resident of Canada, and were a patient with retinoblastoma (or a family member or friend of someone diagnosed with retinoblastoma) or a clinician or researcher interested in retinoblastoma. Patients were full partners in study design and implementation, and result dissemination, through involvement in a national working group (1 patient and 9 nonpatients) and steering committee (4 patients and 11 nonpatients). In phase 1 of the study, participants responded to an online survey that asked, "What questions about retinoblastoma would you like to see answered by research?" In phase 2, the steering committee reviewed and refined the list of survey responses and decided on a list of 30 questions to be ranked by means of the nominal group technique in phase 3, a priority-setting workshop.ResultsIn total, 175 retinoblastoma research questions were suggested by 59 survey participants (38 patients and 21 nonpatients). The categories with the greatest number of questions were genetics and molecular (45 [25.7%]), second cancer (29 [16.6%]) and psychosocial (27 [15.4%]). The top 10 questions as ranked by the workshop participants (10 patients and 10 nonpatients) fell into 7 categories: second cancer (2 questions), follow-up (2), psychosocial (2), treatment (1), diagnosis (1), global health (1) and miscellaneous (1). The early diagnosis of retinoblastoma was identified as the top retinoblastoma research priority in Canada.InterpretationThe list of priorities will serve as a resource for advocacy groups, research teams and funding agencies that focus on retinoblastoma. The inclusion of researchers as participants was an adaptation of the James Lind Alliance PSP methodology and enriched the research prioritization process.
| S-EPMC7286623 | biostudies-literature
Project description:Because habitat loss is the main cause of extinction, where and how much society chooses to protect is vital for saving species. The United States is well positioned economically and politically to pursue habitat conservation should it be a societal goal. We assessed the US protected area portfolio with respect to biodiversity in the country. New synthesis maps for terrestrial vertebrates, freshwater fish, and trees permit comparison with protected areas to identify priorities for future conservation investment. Although the total area protected is substantial, its geographic configuration is nearly the opposite of patterns of endemism within the country. Most protected lands are in the West, whereas the vulnerable species are largely in the Southeast. Private land protections are significant, but they are not concentrated where the priorities are. To adequately protect the nation's unique biodiversity, we recommend specific areas deserving additional protection, some of them including public lands, but many others requiring private investment.
| S-EPMC4413281 | biostudies-literature
Project description:BackgroundMeasurement-based care (MBC) is the practice of routinely administering standardized measures to support clinical decision-making and monitor treatment progress. Despite evidence of its effectiveness, MBC is rarely adopted in routine substance use disorder (SUD) treatment settings and little is known about the factors that may improve its adoptability in these settings. The current study gathered qualitative data from SUD treatment clinicians about their perceptions of MBC, the clinical outcomes they would most like to monitor in MBC, and suggestions for the design and implementation of MBC systems in their settings.MethodsFifteen clinicians from one publicly-funded and two privately-funded outpatient SUD treatment clinics participated in one-on-one research interviews. Interviews focused on clinicians' perceived benefits, drawbacks, and ideas related to implementing MBC technology into their clinical workflows. Interviews were audio recorded, transcribed, and coded to allow for thematic analysis using a mixed deductive and inductive approach. Clinicians also completed a card sorting task to rate the perceived helpfulness of routinely measuring and monitoring different treatment outcomes.ResultsClinicians reported several potential benefits of MBC, including improved patient-provider communication, client empowerment, and improved communication between clinicians. Clinicians also expressed potential drawbacks, including concerns about subjectivity in patient self-reports, limits to personalization, increased time burdens, and needing to learn to use new technologies. Clinicians generated several ideas and preferences aimed at minimizing burden of MBC, illustrating clinical changes over time, improving ease of use, and improving personalization. Numerous patient outcomes were identified as "very helpful" to track, including coping skills, social support, and motivation for change.ConclusionsMBC may be a beneficial tool for improving clinical care in SUD treatment settings. MBC tools may be particularly adoptable if they are compatible with existing workflows, help illustrate gradual and nonlinear progress in SUD treatment, measure outcomes perceived as clinically useful, accommodate multiple use cases and stakeholder groups, and are framed as an additional source of information meant to augment, rather than replace, existing practices and information sources.
| S-EPMC8205211 | biostudies-literature
Project description:ObjectiveTo learn how minority and underserved communities would set priorities for patient-centered outcomes research (PCOR).Data sourcesSixteen groups (n = 183) from minority and underserved communities in two states deliberated about PCOR priorities using the simulation exercise CHoosing All Together (CHAT). Most participants were minority, one-third reported income <$10,000, and one-fourth reported fair/poor health.DesignAcademic-community partnerships adapted CHAT for PCOR priority setting using existing research agendas and interviews with community leaders, clinicians, and key informants.Data collectionTablet-based CHAT collected demographic information, individual priorities before and after group deliberation, and groups' priorities.Principal findingsIndividuals and groups prioritized research on Quality of Life, Patient-Doctor, Access, Special Needs, and (by total resources spent) Compare Approaches. Those with less than a high school education were less likely to prioritize New Approaches, Patient-Doctor, Quality of Life, and Families/Caregivers. Blacks were less likely to prioritize research on Causes of Disease, New Approaches, and Compare Approaches than whites. Compare Approaches, Special Needs, Access, and Families/Caregivers were significantly more likely to be selected by individuals after compared to before deliberation.ConclusionsMembers of underserved communities, in informed deliberations, prioritized research on Quality of Life, Patient-Doctor, Special Needs, Access, and Compare Approaches.
| S-EPMC5346487 | biostudies-literature
Project description:To set priorities for new systematic reviews (SRs) and randomized clinical trials on the management of primary angle closure (PAC) using clinical practice guidelines and a survey of Asia-Pacific clinicians.We restated the American Academy of Ophthalmology's Preferred Practice Patterns recommendations for management of PAC into answerable clinical questions. We asked participants at the Asia-Pacific Joint Glaucoma Congress 2010 in Taipei to rate the importance of having an answer to each question for providing effective patient care, using a Likert-type scale and scoring from 0 (not important at all) to 10 (highly important). We identified relevant SRs and mapped the evidence to clinical questions to identify evidence gaps.We generated 42 clinical questions. One hundred seventy-five individuals agreed to participate in the survey, 132 responded (75.4% response rate) and 96 completed the questionnaire (54.9% usable response rate). Questions rated important include laser iridotomy for the prevention of angle closure in primary angle-closure suspects, further therapies in eyes with plateau iris syndrome after laser iridotomy, and evaluation of the fellow eye in acute angle-closure patients for improving prognosis. Up-to-date and conclusive SR evidence was not available for any of the 42 clinical questions.We identified high priority clinical questions on the management of PAC, none of which had reliable SR evidence available. New SRs and randomized clinical trials can be initiated to address these evidence gaps.
| S-EPMC3883875 | biostudies-literature