HD Involving People Group

We are looking for 10 people living in or near SE Wales to attend our first meeting on Tuesday 7th June 2011 in Cardiff. Travel expenses and other reasonable expenses to support active involvement will be covered by Involving People. This will include carer replacement costs where necessary.
You will be offered payment for time of £65 for the half day meeting.
What is Involving People?
Involving People has been set up to support and encourage patient, service user and carer involvement in health and social care research in Wales. By involvement in research we mean active involvement, where people are not just the subjects of research but are working with researchers to plan, manage, carry out and present research. This could mean checking patient leaflets, discussing research ideas and priorities, giving a carer’s perspective on an issue or helping to spread the results of research. We believe that involving people leads to research that is more relevant to people’s needs and concerns, is more reliable and is more likely to be used to improve health and social care services.
Who can get involved in the Huntington’s Disease Involving People Group?
Ideally, people who:
- have current or recent experience of Huntington’s disease as a patient/carer/health service user;
- are willing to attend training to increase knowledge and develop skills in understanding the research process and being a lay representative;
- are able to listen to others and express their own views from their own perspectives in a constructive way;
- have confidence in working with a mixed group of patients, carers and health professionals;
- are able to attend meetings;
- are able to use e-mail
What will be required of you if you get involved?
Your involvement is flexible and can be as much or as little as you wish. The objective of our first meeting is to work out how we can be as inclusive and representative of all people with experience of Huntington’s disease, how we can share research findings, how we can decide what research should be carried out and what we need to do to achieve all of this. If you are interested in getting involved, please email Monica Busse at [email protected] by 30th April 2011.
We are looking for 10 people living in or near SE Wales to attend our first meeting on Tuesday 7th June 2011 in Cardiff. Travel expenses and other reasonable expenses to support active involvement will be covered by Involving People. This will include carer replacement costs where necessary.
You will be offered payment for time of £65 for the half day meeting.
What is Involving People?
Involving People has been set up to support and encourage patient, service user and carer involvement in health and social care research in Wales. By involvement in research we mean active involvement, where people are not just the subjects of research but are working with researchers to plan, manage, carry out and present research. This could mean checking patient leaflets, discussing research ideas and priorities, giving a carer’s perspective on an issue or helping to spread the results of research. We believe that involving people leads to research that is more relevant to people’s needs and concerns, is more reliable and is more likely to be used to improve health and social care services.
Who can get involved in the Huntington’s Disease Involving People Group?
Ideally, people who:
- have current or recent experience of Huntington’s disease as a patient/carer/health service user;
- are willing to attend training to increase knowledge and develop skills in understanding the research process and being a lay representative;
- are able to listen to others and express their own views from their own perspectives in a constructive way;
- have confidence in working with a mixed group of patients, carers and health professionals;
- are able to attend meetings;
- are able to use e-mail
What will be required of you if you get involved?
Your involvement is flexible and can be as much or as little as you wish. The objective of our first meeting is to work out how we can be as inclusive and representative of all people with experience of Huntington’s disease, how we can share research findings, how we can decide what research should be carried out and what we need to do to achieve all of this. If you are interested in getting involved, please email Monica Busse at [email protected] by 30th April 2011.