The National Health and Medical Research Council (NHMRC), one of the primary funding sources for health and medical research in Australia - including dementia research have requested feedback in relation to their “Statement” on Consumer Involvement in Research.
DAI were proud to present our thoughts on the overall quality of the authentic involvement of people living with dementia in the research context, and to suggest ways that the NHMRC Statement and associated guidance could be tailored to improve the quality and consistency of co-design and embedded living experience in research.
The NHMRC offered DAI representatives Kate Swaffer and Theresa Flavin the accessible option of providing verbal feedback, followed up by a formal submission. DAI welcomes the respectful and enlightening interaction with NHMRC and look forward to improved and more fruitful working relationships between people living with dementia and researchers.
You can read the full submission from DAI here.
The submission includes 14 recommendations on how the NHMRC can make the Consumer Involvement Statement more accessible and effective from our perspective as people living with dementia.
DAI is eager to participate in the review of NHMRC processes to enhance community involvement in research, particularly focusing on the safety of people living with dementia. We aim to provide input on:
Upskilling researchers in effective communication with individuals living with disabilities
Networking opportunities for researchers
Mentoring programs
Developing a basic understanding of risk management in the research context
We also advocate for funding applications to include the necessary mental and physical support for people living with dementia, ensuring they are included in the research process just like any other priority population with disabilities.
Once again, you can find the full submission here.