innovative user involvement in research: how to and not to involve … · 2020. 5. 26. ·...
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INNOVATIVE USER INVOLVEMENT IN RESEARCH: HOW TO AND NOT TO INVOLVE
USERS BEFORE, DURING AND AFTER RESEARCH PROJECTS?
ELIN HOLTER ANTHONISEN
HEAD OF RESEARCH SECTION
Department of Global Public Health and Primary Care, UiB 20.5.2020
Who are we?
Elin Holter Anthonisen, Head of Research Section
One of the most known and influential NGOs in Norway,
established in 1938.
A nationwide organization for voluntary efforts against
cancer.
Our objective is to work to prevent and fight cancer, and
to ensure the best quality of life for patients and their
families.
- 113 500 members
- 27 500 volunteers
- 190 employees
- 18 cooperating patient organizations
- 8 District offices
Broad Effort in The Fight Against Cancer
• Cancer Research− The largest financial contributor to cancer research outside the public sector in
Norway
− Support high quality research that benefits cancer patients short-term and long-
term
• Health information− Prevention and treatment of cancer
• Help to cancer patients and their next-of-kin
• Political lobbying and public awareness− Influence authorities, public health services and public opinion
• International cooperation
• User involvement
Elin Holter Anthonisen, Head of Research Section
User Involvement in Research:1. Influencer2. Help with recruiting user to
research projects3. Participate as a user
organization in research projects
4. Include users in our evaluation of applications for research funding
WHATWhat we do?
HOWHow do we do it?
How to – and Not to Involve Users in Research
WHYWhy do we do
it?
Why – The purposeWhat is your cause? What do you believe?
How – The processSpecific actions to realize the Why
What – The resultsWhat do you do? The result of Why. Proof
Elin Holter Anthonisen, Head of Research Section
User Involvement in Research – WHY?
Elin Holter Anthonisen, Head of Research Section
WHAT - How User Involvement Enhance Research?
Elin Holter Anthonisen, Head of Research Section
Greater relevance Involving users ensures that researchers demonstrate accountability to people with cancer
and that the work being undertaken has the greatest relevance
Stronger funding applications Applications reviewed or written by users clearly illustrate aims, patient
benefits and study importance to all reviewing committee members
Improved communication Engaging with a new audience and more people will improve verbal and written
communication skills – practice makes perfect!
Motivation and focus Hearing from people living with cancer and what the difference research makes to their
lives will provide an extra level of motivation
Novel perspectives Involving users in research brings new insight and perspective to the table that basic
researchers don’t routinely hear
Increased recruitment Users can increase sample donation and the retention of crucial donors by helping to
write accessible, engaging patient information and devising patient sensitive study designs
New ideas Talking to wider groups of users, particularly at early stages of research, broadens the field of influence
thus generating novel challenge, discussion and ideas
Public interest and engagement Users involved and invested in studies are excellent research
advocates and can generate more interest from the general public
Greater impact Studies have shown that carefully considered involvement activities make for more impactful
research
NCS wants to motivate a dialogue between researcher and user, where the interaction between experiential knowledge and professional knowledge makes the research more visible and more relevant.
Important aspect:• Clarification of expectations• Communication• Training• Separation of power• Trust and Respect
Elin Holter Anthonisen, Head of Research Section
User Involvement in Research – HOW?
User Involvement in Research – HOW?
Choose a Strategy:
1. Type of users?
2. Role of users?
3. When and where to be involved?
Elin Holter Anthonisen, Head of Research Section
Who are the «Users» in Research?
The Norwegian Cancer Society focuses on the end users of the research results
defined as:
➢Cancer patients and their next of kin
➢The public
➢The relevant research community itself
➢Decision-makers at various levels within the health care services
The applicants must define who the users are and in what way they are
to be involved in the project
Elin Holter Anthonisen, Head of Research Section
Co-creating
Co-operation
Involve
Consult
Inform
Levels of User Involvement
https://www.slideshare.net/JarleStrmmen/klinikt2015-brukerinvolvering-image-eller-reell-
verdi
Elin Holter Anthonisen, Head of Research Section
Passive
Active
Elin Holter Anthonisen, Head of Research Section
Conflicts of Interest in User Involvement
• Goal or instrument?
• Co-researcher?
• Needs-identified research / AcademicResearch (Independence of Research)
https://www.dam.no/2019/10/01/forskningsseminar-2019/
Elin Holter Anthonisen, Head of Research Section
Brukermedvirkning i kreftforskning https://kreftforeningen.no/forskning/brukermedvirkning/
Elin Holter Anthonisen, Head of Research Section
User Involvement in Research: [email protected]
Contact us!
Elin Holter Anthonisen, Head of Research Section
Takk for oppmerksomheten!Thank you for your attention!
Elin Holter Anthonisen, Head of Research Section