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Background: There is increasing global support from governments and other funding bodies for community involvement in research, alongside a scientific and moral imperative for responsible and ethical research practice. Ninety per cent of Australian patient-led organisations in rare diseases have clearly articulated research priorities, indicating a desire among people affected by disease to be involved in research that impacts their communities. Philanthropic research, which is likely to have predominantly community-minded priorities, is worth over AU$1 billion annually and increased more than 100% between 2007 and 2017. Aims: This research aimed to understand public perspectives on community involvement in health-related research activities, and to inform the development of guidelines for genomic researchers to improve this involvement. Methods: A 37-question survey was completed by 1,156 members of the Australian public via Dynata. The survey was co-designed by the Involve Australia Working Group of community members within Australian Genomics. Results from 1156 responses were analysed. Results: Key themes emerging from the survey data that impact potential involvement were low community confidence to contribute, a limited understanding of community involvement, roles and recognition, trust and governance of data, perceived trustworthiness of research funders, and factors related to time and personal resources. A variety of motivations for involvement were also stated. Conclusion: Members of the Australian public are interested in research involvement; however the differences between involvement and participation are poorly understood and a variety of barriers still exist. Researchers must actively reach out into communities and offer opportunities to engage with research and identify community priorities. Plain English summary: It is well understood that involving the community in research about them is an important part of good science, and it helps to make sure that health research has a positive impact on communities (people who use the health services). This study aims to understand how the Australian public feels about becoming involved in research about their community's health. A team of community members and researchers from a group called Involve Australia designed a survey to ask members of the Australian public to share their views. The survey was sent out by a company called Dynata and 1,156 people responded. • More than half of the people said they were living with a health condition • One third of the people said that they lived with someone who had a health condition • One third of the people said they had university degrees • Most of the people had Australian ancestry • Under one third of the households earned more than $100,000 per year Only 26 people had been involved in research before, and from these people: • 18 had a university degree • Just over half of the people were working in paid jobs • More than half also worked as volunteers • Half of the households earned more than $100,000 per year All members of the Involve Australia team helped to analyse the survey results for all 1,156 people, which showed us that many people did not understand the difference between involvement and participation. We know this because lots of people said they would not get involved with research because they were worried about their private information being shared or scared of the medicines or procedures (for example, needles) they might have to take. These reflect activities of participation, not involvement. A quarter of the people were worried they did not have enough knowledge or education to become involved in research. They were not confident that they could add value to research. Some people (15%) said they weren't interested in research, but the ones who said they were interested told us they wanted to help with designing the research, helping to write the research papers, and updating their communities on the research. They also said they wanted their work to be recognised and they would like to be paid for their time, and that they would be more likely to get involved if it was easy. For example, they spoke about not travelling a long way, using Zoom and phone, not paying for parking, and making sure the places they had to go were accessible for everyone. People said they were more likely to get involved if they trusted the researcher or the company doing the research. They were more likely to get involved if the organisation was not a private company trying to make money. Most of the people said they would get involved in research that helped someone they loved, or people in their community. Many told us that they wanted younger people with health issues to have a better life than they had, and that they would get involved with research to make that happen. This research shows that community members and researchers should speak with each other more often. People said they wanted to know what research was happening and they also wanted to tell researchers what they thought was most important. The Involve Australia group suggests that research institutions and universities need to have good relationships with the people in their communities, and that researchers need to have time and resources to build these relationships. [ABSTRACT FROM AUTHOR] |
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