| Popis: |
BackgroundPatient support groups (PSGs) are generally defined as a group of people with common experiences and concerns, and they provide emotional and moral support for one another. Despite their widely reported benefits, there are no studies conducted on the regulation of PSGs in Malaysia and their quality of support. We conducted this exploratory research to identify, map and describe PSGs in Malaysia aimed at identifying PSGs that might be interested in receiving training in understanding and using high-level research evidence such as Cochrane evidence. The ultimate goal is to empower patients to make evidence-based healthcare decisions.MethodsWe performed an online search and contacted practising physicians from various specialties for suggestions of known PSGs. We examined the websites of all identified PSGs and extracted data describing their organisation, purpose and function. Results A total of 44 PSGs meeting our criteria were included. Most of the PSGs identified catered to disease groups, mainly NGOs and informal Facebook groups. Most of them provided support to the patient and their family or caretakers in very similar ways, with some minor variations. About one-third had a stated mission and vision or objectives. None of the PSGs provided a description of their funding policy or provided any statement of awareness of conflict of interest (COI). Where information on funding sources was included it was not clear whether there could be a COI in it. Although the websites did not include advertising, one included a logo of a major pharma company. Only 4 included in any website scientific references to support the information included in the websiteConclusionsPSGs operating in Malaysia have a clear mission statement, vision and objectives on their website describing their intention and role in supporting patients in a holistic manner. They practise a partnership model with their users. Aspects that could be addressed include PSGs’ stance on COI and transparency in sources of funding. There may be a need to engage with PSGs to help them seek feedback from users and to help them understand and use reliable research in their education of their target patient groups. |
