The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study.
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SUBMITTER: Corner J
PROVIDER: S-EPMC2360101 | biostudies-other | 2007 Mar
REPOSITORIES: biostudies-other
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Project description:The Vascular Research Collaborative was established to develop a national research strategy for patients with vascular disease in the UK. This project aimed to establish national research priorities in this patient group. A modified Delphi approach, an established method for reaching a consensus opinion among a group of experts in a particular field, was used to survey national multidisciplinary vascular clinical specialists. Two rounds of online surveys were conducted involving the membership of the Vascular Society, Society of Vascular Nurses, Society for Vascular Technology, and the Rouleaux Club (vascular surgical trainees). The first round invited any suggestions for vascular research topics. A steering group then collated and rationalized the suggestions, categorizing them by consensus into pathological topics and research categories, and amalgamating the various questions relating to the same fundamental issue into a single question. The second round involved recirculating these questions to the same participants for priority scoring. Round 1 resulted in 1231 suggested research questions from 481 respondents. Steering group collation and rationalization resulted in 83 questions for ranking in round 2. The second round resulted in a hierarchical list of vascular research priorities. The highest scoring priorities addressed topics related to critical lower-limb ischaemia, diabetic foot disease, amputation, wound healing, carotid plaque morphology, and service organization/delivery. It is anticipated that these results will drive the UK national vascular research agenda for the next 5-10 years. It will facilitate focused development and funding of new research projects in current clinical areas of unmet need where potential impact is greatest.
| S-EPMC7944495 | biostudies-literature
Project description:BACKGROUND AND OBJECTIVES:The absence of accepted patient-centered outcomes in research can limit shared decision-making in peritoneal dialysis (PD), particularly because PD-related treatments can be associated with mortality, technique failure, and complications that can impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in PD, and to describe the reasons for their choices. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS:Patients on PD and their caregivers were purposively sampled from nine dialysis units across Australia, the United States, and Hong Kong. Using nominal group technique, participants identified and ranked outcomes, and discussed the reasons for their choices. An importance score (scale 0-1) was calculated for each outcome. Qualitative data were analyzed thematically. RESULTS:Across 14 groups, 126 participants (81 patients, 45 caregivers), aged 18-84 (mean 54, SD 15) years, identified 56 outcomes. The ten highest ranked outcomes were PD infection (importance score, 0.27), mortality (0.25), fatigue (0.25), flexibility with time (0.18), BP (0.17), PD failure (0.16), ability to travel (0.15), sleep (0.14), ability to work (0.14), and effect on family (0.12). Mortality was ranked first in Australia, second in Hong Kong, and 15th in the United States. The five themes were serious and cascading consequences on health, current and impending relevance, maintaining role and social functioning, requiring constant vigilance, and beyond control and responsibility. CONCLUSIONS:For patients on PD and their caregivers, PD-related infection, mortality, and fatigue were of highest priority, and were focused on health, maintaining lifestyle, and self-management. Reporting these patient-centered outcomes may enhance the relevance of research to inform shared decision-making.
| S-EPMC6364541 | biostudies-literature
Project description:BackgroundStandard interpretations of the ethical principle of respect for persons have not incorporated the views and values of patients, especially patients from groups underrepresented in research. This limits the ability of research ethics scholarship, guidance, and oversight to support inclusive, patient-centered research. This study aimed to identify the practical approaches that patients in community-based settings value most for conveying respect in genomics research.MethodsWe conducted a 3-round, web-based survey using the modified Delphi technique to identify areas of agreement among English-speaking patients at primary care clinics in Washington State and Idaho who had a personal or family history of cancer. In Round 1, respondents rated the importance of 17 items, identified in prior qualitative work, for feeling respected. In Round 2, respondents re-rated each item after reviewing overall group ratings. In Round 3, respondents ranked a subset of the 8 most highly rated items. We calculated each item's mean and median rankings in Round 3 to identify which approaches were most important for feeling respected in research.ResultsForty-one patients consented to the survey, 21 (51%) completed Round 1, and 18 (86% of Round 1) completed each of Rounds 2 and 3. Two sets of rankings were excluded from analysis as speed of response suggested they had not completed the Round 3 ranking task. Respondents prioritized provision of study information to support decision-making (mean ranking 2.6 out of 8; median ranking 1.5) and interactions with research staff characterized by kindness, patience, and a lack of judgment (mean ranking 2.8; median ranking 2) as the most important approaches for conveying respect.ConclusionsInformed consent and interpersonal interactions are key ways that research participants experience respect. These can be supported by other approaches to respecting participants, especially when consent and/or direct interactions are infeasible. Future work should continue to engage with patients in community-based settings to identify best practices for research without consent and examine unique perspectives across clinical and demographic groups in different types of research.
| S-EPMC10512546 | biostudies-literature
Project description:ContextPatient experience is an important component of high-quality care and is linked to improved clinical outcomes across a range of different conditions. Patient-reported experience measures (PREMs) are psychometrically validated instruments designed to identify where strengths and vulnerabilities in care exist. Currently, there is no validated instrument available to measure patient experience among people aged over 65 years attending the emergency department (ED).ObjectiveThis paper aims to describe the process of generating, refining and prioritising candidate items for inclusion in a new PREM measuring older adults' experiences in ED (PREM-ED 65).DesignOne hundred and thirty-six draft items were generated via a systematic review, interviews with patients and focus groups with ED staff exploring older adults' experiences in the ED. A 1-day multiple stakeholder workshop was then convened to refine and prioritise these items. The workshop entailed a modified nominal groups technique exercise comprised of three discrete parts-(i) item familiarisation and comprehension assessment, (ii) initial voting and (iii) final adjudication.Setting and participantsTwenty-nine participants attended the stakeholder workshop, conducted in a nonhealthcare setting (Buckfast Abbey). The average age of participants was 65.6 years. Self-reported prior experiences of emergency care among the participants included attending the ED as a patient (n = 16, 55.2%); accompanying person (n = 11, 37.9%) and/or as a healthcare provider (n = 7, 24.1%).ResultsParticipants were allocated time to familiarise themselves with the draft items, suggest any improvements to the item structure or content, and suggest new items. Two additional items were proposed by participants, yielding a total of 138 items for prioritisation. Initial prioritisation deemed most items 'critically important' (priority 7-9 out of 9, n = 104, 75.4%). Of these, 70 items demonstrated suitable inter-rater agreement (mean average deviation from the median < 1.04) and were recommended for automatic inclusion. Participants then undertook final adjudication to include or exclude the remaining items, using forced choice voting. A further 29 items were included. Thirty-nine items did not meet the criteria for inclusion.ConclusionsThis study has generated a list of 99 prioritised candidate items for inclusion in the draft PREM-ED 65 instrument. These items highlight areas of patient experience that are particularly important to older adults accessing emergency care. This may be of direct interest to those looking to improve the patient experience for older adults in the ED. For the final stage of development, psychometric validation amongst a real-world population of ED patients is now planned.Patient and public contributionInitial item generation was informed using qualitative research, including interviews with patients in the ED. The opinions of patients and members of the public were integral to achieving outcomes from the prioritisation meeting. The lay chair of the Royal College of Emergency Medicine participated in the meeting and reviewed the results of this study.
| S-EPMC10485325 | biostudies-literature
Project description:ObjectivesThere is a mismatch between research questions considered important by patients, carers and healthcare professionals and the research performed in many fields of medicine. The non-alcohol-related liver and gallbladder disorders priority setting partnership was established to identify the top research priorities in the prevention, diagnostic and treatment of gallbladder disorders and liver disorders not covered by the James-Lind Alliance (JLA) alcohol-related liver disease priority setting partnership.DesignThe methods broadly followed the principles of the JLA guidebook. The one major deviation from the JLA methodology was the final step of identifying priorities: instead of prioritisation by group discussions at a consensus workshop involving stakeholders, the prioritisation was achieved by a modified Delphi consensus process.ResultsA total of 428 unique valid diagnostic or treatment research questions were identified. A literature review established that none of these questions were considered 'answered' that is, high-quality systematic reviews suggest that further research is not required on the topic. The Delphi panel achieved consensus (at least 80% Delphi panel members agreed) that a research question was a top research priority for six questions. Four additional research questions with highest proportion of Delphi panel members ranking the question as highly important were added to constitute the top 10 research priorities.ConclusionsA priority setting process involving patients, carers and healthcare professionals has been used to identify the top 10priority areas for research related to liver and gallbladder disorders. Basic, translational, clinical and public health research are required to address these uncertainties.
| S-EPMC6429888 | biostudies-literature
Project description:ObjectivesMedical schools considering longitudinal integrated clerkships (LICs) have access to literature that provides recommendations for planning, implementation, and sustainability. However, LIC development and implementation remain notoriously challenging. University of Utah's LIC development process was informed by the documented experiences of long-established LIC programs. A literature gap was identified pertaining to more recently implemented LICs. The aim of this study was to explore the experiences of faculty in the early stages of LIC development.MethodsThirteen representatives from eight LICs implemented after 2015 participated in 2 Zoom focus groups (5 participated in the first and the other 8 participated in the second). Participants were asked questions to assess key supports, barriers, and recommendations. Following the focus groups, participants were asked to rank the responses based on their level of importance.ResultsHighest ranked supports included stakeholder and partner involvement; a dedicated coordinator or team; and strong, committed leadership. Highest ranked barriers included difficulty recruiting preceptors and clinical sites; underestimation of the amount of work required to coordinate the LIC; and challenges in providing the needed faculty development. Top recommendations for new LICs included investing in the needs of clinical partners; staffing or assigning a dedicated coordinator early in the development and implementation process; and frequent communication with all stakeholders.ConclusionDespite variation among the types of new LICs represented, there was consensus among participants on the importance of key supports, barriers, and recommendations. Knowledge of these factors can help new schools plan and allocate resources during their LIC development process. Participants found the focus group process and follow-up discussions useful and have formed an ongoing workgroup which meets quarterly.
| S-EPMC10725107 | biostudies-literature
Project description:Background Abdominal wall hernia repair is one of the most commonly performed surgical procedures worldwide, yet despite this, there remains a lack of high-quality evidence to support best management. The aim of the study was to use a modified Delphi process to determine future research priorities in this field. Methods Stakeholders were invited by email, using British Hernia Society membership details or Twitter, to submit individual research questions via an online survey. In addition, questions obtained from a patient focus group (PFG) were collated to form Phase I. Two rounds of prioritization by stakeholders (phases II and III) were then completed to determine a final list of research questions. All questions were analyzed on an anonymized basis. Results A total of 266 questions, 19 from the PFG, were submitted by 113 stakeholders in Phase I. Of these, 64 questions were taken forward for prioritization in Phase II, which was completed by 107 stakeholders. Following Phase II analysis, 97 stakeholders prioritized 36 questions in Phase III. This resulted in a final list of 14 research questions, 3 of which were from the PFG. Stakeholders included patients and healthcare professionals (consultant surgeons, trainee surgeons and other multidisciplinary members) from over 27 countries during the 3 phases. Conclusion The study has identified 14 key research priorities pertaining to abdominal wall hernia surgery. Uniquely, these priorities have been determined from participation by both healthcare professionals and patients. These priorities should now be addressed by well-designed, high-quality international collaborative research. Supplementary Information The online version contains supplementary material available at 10.1007/s10029-021-02519-0.
| S-EPMC8557712 | biostudies-literature
Project description:BackgroundDischarge from acute mental health services has long been associated with mortality, risk, and related adverse outcomes for patients. Many of the interventions that currently aim to reduce adverse outcomes focus on a single group of healthcare professionals within a single healthcare setting. A recent systematic review highlights very few robust interventions that specifically aim to improve communication across services. However the importance of promoting interagency working and improving information flow between services is continually highlighted as a key priority.MethodsUsing a novel codesign and experience based approach we worked with a multistakeholder group to develop possible solutions to reduce the adverse outcomes commonly associated with discharge from acute mental health services. This utilized a modified Nominal Group Technique and creative problem solving method to follow a four-stage process: Problem Identification, Solution Generation, Decision-Making, Prioritization and Implementation. Thirty-two healthcare professionals and an expert by lived experienced engaged with the process that took place over two stakeholder events.ResultsStakeholders at the first event identified and agreed upon 24 potential ideas to improve discharge from acute mental health services. These were refined at the second event to four elements of an interagency intervention: a multiagency 'Discharge Team' (with designated discharge coordinator), inclusive technology enabled team meetings, universal documentation and a patient generated discharge plan.ConclusionThis is the first study to codesign an interagency mental health discharge intervention based around a discharge team. We developed a model for working that places a greater focus on a patient generated discharge plan, interagency working, and information flow. A pilot of the proposed intervention is now needed to test the feasibility and effectiveness in reducing adverse outcomes.
| S-EPMC7186904 | biostudies-literature
Project description:Homecare is generally understood to refer to services that support people to continue living in their own homes. Older people are the primary users and many countries report an increase in the number using homecare services and greater spending on such provision, driven in part by investment in 'ageing in place' policies. Despite this, and reflecting social care more generally, homecare is relatively under-researched. However, in the UK at least, there is growing interest and investment in social care research. In order that this investment is not wasted, it is essential that research addresses what stakeholders identify as research priorities. This study reports work undertaken in the UK during 2021/22 to identify research priorities for homecare for older people, and a broad scoping of existing evidence. A two-stage consultation process was used. First, topic areas for research were identified through consultations with stakeholders. Second, a survey ascertained agreement and differences between groups regarding the relative importance of topic areas as research priorities. Over 50 people participated including older people (n = 7), family members (n = 11), homecare workers (n = 16), homecare providers (n = 9) and national policy, evidence and advocacy leads (n = 13). Twenty discrete research topic areas were identified. Only one topic area (Joint working between homecare and health services) was a 'Top 5' research priority for all stakeholder groups. Timely engagement with homecare and Workforce: recruitment and retention were 'Top 5' priorities for three stakeholder groups. Scoping of existing research indicates that topic areas receiving the most research attention to date are not among those identified as being of high priority for research. To our knowledge, this is the first time research priorities for homecare have been generated. Findings will be of value to research funders, organisations using research evidence and the research community.
| S-EPMC10087309 | biostudies-literature
Project description:BackgroundDevelopments in digital health have the potential to transform the delivery of health and social care to help citizens manage their health. Currently, there is a lack of consensus about digital health research priorities in palliative care and a lack of theories about how these technologies might improve care outcomes. Therefore, it is important for health care leaders to identify innovations to ensure that an increasingly frail population has appropriate access to palliative care services. Consequently, it is important to articulate research priorities as the first step in determining how finite resources should be allocated to a field saturated with rapidly developing innovation.ObjectiveThe aim of this study is to identify research priority areas for digital health in palliative care.MethodsWe selected digital health trends, most relevant to palliative care, from a list of emerging trends reported by a leading institute of quantitative futurists. We conducted 2 rounds of the Delphi questionnaire, followed by a consensus meeting and public engagement workshop to establish a final consensus on research priorities for digital technology in palliative care. We used the views of public representatives to gain their perspectives on the agreed priorities.ResultsA total of 103 experts (representing 11 countries) participated in the first Delphi round. Of the 103 experts, 55 (53.3%) participated in the second round. The final consensus meetings were attended by 10.7% (11/103) of the experts. We identified 16 priority areas, which involved many applications of technologies, including care for patients and caregivers, self-management and reporting of diseases, education and training, communication, care coordination, and research methodology. We summarized the priority areas into eight topics: big data, mobile devices, telehealth and telemedicine, virtual reality, artificial intelligence, smart home, biotechnology, and digital legacy.ConclusionsThe priorities identified in this study represent a wide range of important emerging areas in the fields of digital health, personalized medicine, and data science. Human-centered design and robust governance systems should be considered in future research. It is important that the risks of using these technologies in palliative care are properly addressed to ensure that these tools are used meaningfully, wisely, and safely and do not cause unintentional harm.
| S-EPMC9090235 | biostudies-literature