Dataset Information

Development of a consumer involvement strategy for a small university-based musculoskeletal research centre.

ABSTRACT:

Objective

To develop a Consumer Involvement Strategy which adheres to best practice recommendations and is feasible to implement in a small musculoskeletal research centre funded solely by external grants.

Methods

The Strategy development involved five collaborative and iterative stages: (1) conceptualisation and initial consultation; (2) formation of the Consumer Involvement Strategy Action Group; (3) defining the scope and developing the strategy; (4) consultation and refinement; and (5) presentation and implementation. The final three stages were overseen by a Consumer Involvement Strategy Action Group comprising two post-doctoral research fellows, a PhD student representative, and two consumers (people with osteoarthritis), all with experience in consumer involvement activities in research.

Results

The final strategy aligns with best practice recommendations and includes five unique levels of consumer involvement that were devised to encompass the wide variety of consumer involvement activities across the research centre. It includes a policy document with five strategic aims, each supported by an implementation plan, and includes a suite of resources for researchers and consumers to support its application.

Conclusion

The Consumer Involvement Strategy and its described development may serve as a template for other research teams facing similar resource constraints, both at a national and international level.

SUBMITTER: Nelligan RK

PROVIDER: S-EPMC10947031 | biostudies-literature | 2023 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Development of a consumer involvement strategy for a small university-based musculoskeletal research centre.

Nelligan Rachel K RK Haber Travis T Bennell Kim L KL Hinman Rana S RS Bidgood Neil N Marlow Jennifer J Lawford Belinda J BJ

Musculoskeletal care 20230818 4

<h4>Objective</h4>To develop a Consumer Involvement Strategy which adheres to best practice recommendations and is feasible to implement in a small musculoskeletal research centre funded solely by external grants.<h4>Methods</h4>The Strategy development involved five collaborative and iterative stages: (1) conceptualisation and initial consultation; (2) formation of the Consumer Involvement Strategy Action Group; (3) defining the scope and developing the strategy; (4) consultation and refinement ...[more]

PMID: 37594377

Similar Datasets

Project description:BackgroundPatient and public involvement work (PPI) is essential to good research practice. Existing research indicates that PPI offers benefits to research design, conduct, communication, and implementation of findings. Understanding how PPI works and its value helps to provide information about best practice and highlight areas for further development. This study used a values-based approach to reporting PPI at a Research Unit focused on musculoskeletal conditions within a UK medical school.MethodsThe study was conducted between October 2019 and January 2020 using Gradinger's value system framework as a theoretical basis. The framework comprises three value systems each containing five clusters. All PPI members and researchers who had attended PPI groups were invited to participate. Participants completed a structured questionnaire based on the value system framework; PPI members also provided further information through telephone interviews. Data were deductively analysed using a framework approach with data mapped onto value systems.ResultsTwelve PPI members and 17 researchers took part. Views about PPI activity mapped onto all three value systems. PPI members felt empowered to provide their views, and that their opinions were valued by researchers. It was important to PPI members that they were able to 'give back' and to do something positive with their experiences. Researchers would have liked the groups to be more representative of the wider population, patients highlighted that groups could include more younger members. Researchers recognised the value of PPI, and the study highlighted areas where researchers members might benefit from further awareness.ConclusionsThree areas for development were identified: (i) facilitating researcher engagement in training about the value and importance of PPI in research; (ii) support for researchers to reflect on the role that PPI plays in transparency of healthcare research; (iii) work to further explore and address aspects of diversity and inclusion in PPI.

Project description:The Australian Bragg Centre for Proton Therapy and Research (ABCPTR) established the Bragg Consumer Advisory Group (BCAG) in 2023. The ABCPTR, being the first of its kind in Australia, will offer proton therapy treatment for challenging solid tumours with the potential to reduce radiation-induced side effects. With over 110 Proton Beam Therapy (PBT) centres globally, Australian patients currently can apply to access government funded treatment overseas, however, international travel for treatment presents various, significant challenges. Consumer engagement in healthcare plays a pivotal role in navigating the multifaceted journey of cancer treatment and can complement cancer control strategies by ensuring the practicalities of the cancer journey are realised. The ABCPTR aims to involve consumers in decision-making processes, especially as it prepares to open Australia's first national proton therapy centre. The aim of this commentary is to highlight the importance of involving consumers in cancer care, and to demonstrate how this was done in Australia's first proton therapy centre. To establish a consumer engagement team, ABCPTR utilised existing clinical staff. The team's formation and upskilling were integral to the project's success. The engagement framework was developed based on the five stages of commitment by the Australian Health Research Alliance and Western Australian Health Translation Network. The ABCPTR consumer engagement team successfully created a community engagement framework and upskilled in consumer engagement principles over 9-12 months. An Expression of Interest (EOI) was launched, resulting in the formation of the BCAG comprising of 10 members with diverse backgrounds and experiences. The BCAG has been actively involved in decision-making processes, with a consumer-led chair and co-chair in place. The group's feedback is expected to influence key performance indicators for the centre. The establishment of the BCAG at the ABCPTR emphasises the importance of integrating patient and community perspectives into clinical initiatives. This proactive approach ensures that processes remain patient-centred. The ongoing multi-level consumer engagement strategy aims to shape a more inclusive approach to cancer care in Australia, especially concerning PBT.

Project description:This communication reports on the Mycetoma Research Centre of the University of Khartoum, Sudan experience on 6,792 patients seen during the period 1991-2014.The patients were predominately young (64% under 30 years old) males (76%). The majority (68%) were from the Sudan mycetoma belt and 28% were students. Madurella mycetomatis eumycetoma was the most common type (70%). In 66% of the patients the duration of the disease was less than five years, and 81% gave a history of sinuses discharging mostly black grains (78%). History of trauma at the mycetoma site was reported in 20%. Local pain was reported in 27% of the patients, and only 12% had a family history of mycetoma. The study showed that 57% of the patients had previous surgical excisions and recurrence, and only 4% received previous medical treatment for mycetoma. Other concomitant medical diseases were reported in 4% of the patients. The foot (76%) and hand (8%) were the most commonly affected sites. Less frequently affected sites were the leg and knee (7%), thigh (2%), buttock (2%) and arm and forearm (1%). Rare sites included the chest wall, head and neck, back, abdominal wall, perineum, oral cavity, tongue and eye. Multiple sites mycetoma was recorded in 135 (2%) of cases. At presentation, 37% of patients had massive lesions, 79% had sinuses, 8% had local hyper-hydrosis at the mycetoma lesion, 11% had regional lymphadenopathy, while 6% had dilated tortuous veins proximal to the mycetoma lesions. The diagnosis of mycetoma was established by combined imaging techniques and cytological, histopathological, serological tests and grain culture. Patients with actinomycetoma received a combination of antimicrobial agents, while eumycetoma patients received antifungal agents combined with various surgical excisions. Surgical excisions in the form of wide local excision, debridement or amputation were done in 807 patients, and of them 248 patients (30.7%) had postoperative recurrence. Different types of amputations were done in 120 patients (1.7%).

Project description:BackgroundConsumer involvement in health research is when patients, their families and caregivers work with researchers on research projects. Despite the growing expectation for health services to facilitate the involvement of consumers in research, the practical integration of this approach is an ongoing process, with limited research conducted into how Australian health services can support this practice. This study explored consumer perspectives on the barriers and solutions to enabling consumer involvement in research within an Australian tertiary hospital and health service, and staff perspectives on the solutions to facilitating consumer involvement. A prior survey had identified barriers to consumer involvement from the staff perspective. The broad aim was to inform the development of a framework to help promote consumer involvement in research within the health service.MethodsA Nominal Group Technique (NGT) was utilised with groups comprised of health service consumers and staff. Three health consumers were co-researchers in the full life-cycle of this study and are included as authors.ResultsTen consumers and 14 staff participated across three sessions ranging from one to three hours. For consumers, barriers to their involvement were grouped into seven domains: (1) lack of connection with researchers/research projects, (2) low research literacy, (3) structural barriers, (4) lack of acknowledgement, (5) implementation challenges, (6) inadequate information provision, and (7) representation concerns. Solutions to enabling involvement were grouped into five domains: (1) support to connect with researchers/research projects, (2) adequate information provision, (3) incentive for involvement, (4) acknowledgement, and (5) balanced representation. Staff ideas for solutions were grouped into five domains: (1) support to connect with consumers, (2) support to involve consumers, (3) access to funds to remunerate consumers, (4) more time to involve consumers, and (5) staff training.ConclusionThrough an NGT methodology, this study delivered a nuanced comprehension of perspectives on involving consumers in research from both health service consumers and staff. These findings serve as a foundation for identifying strategies that foster enhanced and refined relationships between consumers and researchers, advancing the collaborative landscape in health research. The findings from this project offer valuable strategies for researchers to better engage consumers in research and for consumer groups to enhance their involvement. Additionally, these insights could be used by other health services to advocate for essential resources.

Project description:We applied the evaluation framework developed by the EU COST Action "Network of Evaluation of One Health" (NEOH) to assess the operations, supporting infrastructures and outcomes of a research consortium "University of Copenhagen Research Centre for Control of Antibiotic Resistance" (UC-CARE). This 4-year research project was a One Health (OH) initiative with participants from 14 departments over four faculties as well as stakeholders from industry and health authorities aiming to produce new knowledge to reduce the development of antimicrobial resistance (AMR). This was a case study focusing on assessing beneficial and counter-productive characteristics that could affect the OH outcomes. The study was also used to provide feedback to NEOH about the evaluation framework. The framework and evaluation tools are described in the introduction paper of this special journal issue. Data for the evaluation were extracted from the funding research proposal, the mid-term UC-CARE project evaluation report and supplemented with opinions elicited from project participants and stakeholders. Here, we describe the underlying system, theory of change behind the initiative and adapted questions from the NEOH tools that we used for semi-open interviews with consortium members throughout the evaluation process. An online survey was used to obtain information from stakeholders. The NEOH evaluation tools were then used for the qualitative and quantitative evaluation of the OH characteristics of UC-CARE. Senior UC-CARE researchers were interested and willing to be interviewed. Young scientists were more difficult to engage in interviews, and only 25% of stakeholders answered the online survey. Interviewees mentioned that the main benefit of UC-CARE was an increased awareness and general understanding of AMR issues. All interviewees stated that the adopted OH approach was relevant given the complexity of AMR. However, some questioned the applicability, and identified potentially counter-productive issues mainly related to the information sharing, collaboration and working methods across the consortium. A more integrated project organization, more stakeholder involvement and time for the project, flexibility in planning and a dedicated OH coordinator were suggested to allow for more knowledge exchange, potentially leading to a higher societal impact.

Dataset Information

Development of a consumer involvement strategy for a small university-based musculoskeletal research centre.

Objective

Methods

Results

Conclusion

Publications

Development of a consumer involvement strategy for a small university-based musculoskeletal research centre.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets