Transcript Patient participation in research

Hjärt- och Lungsjukas Riksförbund
• The Swedish Heart and Lung Association is a Non
Governmental Organisation that unites people with heart
and lung diseases. (approx. 43 000 members)
• It is politically and religiously independent association;
founded in 1939 and has been governed by its members
ever since
•The most important objective is to improve living
conditions for people with heart and lung diseases
The aim of The Swedish Heart and Lung Association is to improve the well-being,
treatment, rehabilitation, social security and living conditions of all people
suffering from heart and lung diseases and to give support to their relatives.
Well-being
Improve day-to-day life for people suffering from heart and lung diseases
Treatment/Rehabilitation
Work for access to best possible treatment and rehabilitation. Supporting research.
Consideration
Caring about people; sharing knowledge and stimulating excersise among its members aiming to
increase well-being and thereby reduce the amount of people with heart and lung diseases
Solidarity
To influence local and governmental politicians to reach equal rights and opportunities for
everyone suffering from heart and lung disease
Three target areas
Our activity programme
It consists of six parts
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Exercise
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Conversation groups
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Study circles on diet
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Handling stress
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Lectures
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Smoking cessation
To create public
opinion
In particular on issues
concerning its
members and to
support the
association’s
objectives
To create
security
support
and
fellowship
to all members
Patient participation in research
A collaboration between
The Swedish Rheumatism Association
Swedish Asthma and Allergy Association
The Swedish Heart and Lung Association
Swedish Psoriasis Association
Four Associations – one project
• Collaboration between researchers and patients gives positive
effects
• Educating patients to become research partners
• Patients affected by research can contribute to research
projects
• A joint three year project
• 50 educated partners
• Focusing on rehabilitation and medical research
What is a Research Partner?
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A patient with a certain diagnosis
Has taken part in a education programme
Can take part in various research projects
Represent other people with the same diagnosis
Patient participation in research
• Educated patients ”research partners”
– The role as a research partner
– Research ethics
– Psychology
• Well informed elected representatives
– Support group
– Greater understanding
Who is a Research Partner?
How do you think your role as a research
partner could be useful for a research
project?
Allan Larsson
Perhaps above all by being able to give views on
patient information, opinions on ethical issues,
research protocols.
Member of The Swedish
Heart and Lung
Association
Is there a special direction of research that you are especially curious
about?
Psycho-social issues related to heart and lung diseases:
•What happens to a person who had suffered a heart attack?
•What happens with relationships, social life, work?
•What impact does this knowledge have on rehabilitation?
The Researcher
• Change in attitudes
• New understanding of patient aspects
• Better opportunities to inform on results
• Knowledge based on research results affects patient organisations
Why do you feel that
participation in various research
projects is important?
It feels very natural that those affected
have both insight and influence in
research. The form it takes is of course
determined by the nature of the research
and the type of patient participation
needs to be tailored to different
requirements.
What is required for a
collaboration to work?
Mutual respect is a key factor I
think. It is necessary to
recognise the unique skills that
patients have and make sure
that it will benefit research in
the best way.
How to become a research partner
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Recruting process
Motivation and interest
Active in their patient association
Easy to communicate & good knowledge in English
Living with a cronic disease
Websites
www.forskningspartner.se
www.hjart-lung.se