What is Public involvement?
Public Involvement is about carrying out research “with” or “by” members of the public (e.g. people living with the condition, their carers/supporters, and the general public) and should be conducted in such a way that it promotes their meaningful and active involvement.
Public Involvement is important for European research projects like PREDICTOM, as it allows members of the public to contribute towards research, not as research participants but as advisors, and have a meaningful impact on research that is “about” and “for” them.
The people contributing to the Public Involvement work in PREDICTOM are experts by experience. They are men and women living in different European countries and from different walks of life. They provide the PREDICTOM researchers with valuable input about relevant issues by sharing their unique life experiences with them.
Why Puclic Involvement?
The goal of Public Involvement is to ensure that research accurately reflects the preferences, needs and priorities of members of the public, and that their perspectives – including experiences and concerns – are included in different aspects of the research process, preferably from the initial development of the project idea through to the end, and beyond.
Public Involvement is not about merely raising awareness or providing information about ongoing or completed research (sometimes referred to as patient engagement) or about being a research participant. Rather, it is about creating a partnership between researchers and the public/patients, whereby all contribute collaboratively in varying degrees towards the research process or the research output.
Public Involvement has been shown to improve the quality of research by enabling researchers to benefit from the lived experience of people with dementia. Also, it helps ensure that research is ethical, and transparent and gives people with dementia a voice, reflecting the principle of “nothing about us without us”.
As dementia-related research is now increasingly focusing on people who do not yet have dementia but are at higher risk (e.g. diagnosed with Mild Cognitive Impairment or Subjective Cognitive Decline), people from these groups should also have the opportunity to voice their opinions.
Experts by experience
Individuals participating in PI activities are sometimes referred to as “experts by experience”. As such, they are invited to contribute to the research process by sharing their personal experiences, opinions, suggestions or concerns on relevant topics with the research teams.
Their contributions are highly valued, as they offer unique perspectives and insights that may open up new avenues of thought and impact the development of the research project. Participants do not need any scientific, technical or specialised knowledge.
It is increasingly being recognised that their input is crucial to the success of the research process. It is therefore important to ensure that they are treated with respect, that their work is properly acknowledged and that contributing towards research in this way is a pleasant experience for them.
To learn more about Public Involvement in dementia research, please see:
Alzheimer Europe’s position paper on involving people with dementia in research through PPI.
The Alzheimer Europe reflection paper on Patient and Public Involvement in research as members of the European Working Group of People with Dementia.