Background<\/h3>\n
Researchers are often criticised for working in isolation, looking at outcomes in people they have never even spoken to in real life. A University of Manchester researcher, Lianne<\/a>, and a patient partner on her research project, Natasha, discuss what it is like working together and what lessons they have learnt.<\/p>\n Dr Lianne Kearsley-Fleet<\/p><\/div>\n Prior experiences of patient involvement in research<\/u>: <\/em>I have been researching outcomes in juvenile idiopathic arthritis (JIA) since 2012. However, with the start of my fellowship (my own research project) in 2024, I knew I wanted to include those with lived experiences of JIA as part of a core group of advisors, known as patient partners. I felt that this was particularly important to ensure that the research I did was relevant and important to those living with JIA.<\/p>\n Recruiting patient partners to be involved<\/u>: <\/em>I assumed it would be extremely challenging to find someone interested to participate as a research partner, a role involving multiple online meetings a year with other members of the research team. However, after reaching out to national arthritis charities to share the opportunity to be a \u2018patient partner\u2019 for my research project, I received many responses of interest.<\/p>\n My first meeting<\/u>: <\/em>For my first full team meeting with patient partners, researchers, and collaborators, I was extremely nervous. I was aware I had little progress to report and was anxious to not waste everyone\u2019s time. However, I knew the importance of bringing everyone together for the project to succeed and was pleasantly surprised by how engaged each person was during the meeting. Whilst the agenda was minimal, the conversations we had were useful and sparked ideas for what we could do in the future. After the meeting, I spent a lot of time reflecting on the processes and what I could have done better. I emailed the patient partners to get their opinions and have aimed to implement as many of them as possible \u2013 see suggestions below.<\/p>\n Prior experiences of patient involvement in research<\/u>: <\/em>I am in my late 20s and have had JIA since I was 1 year old, with uveitis on and off. Whilst I\u2019ve been involved in past arthritis research as a study participant through giving samples as a child with my parents\u2019 consent, I\u2019ve not had much direct experience working with arthritis researchers before, so this has been a different aspect for me in my arthritis volunteering. I\u2019ve been involved with arthritis research since around 2021 through volunteering on the Versus Arthritis Young Peoples Panel, and have attended conferences such as BSR and the Adolescent Rheumatology Symposiums to learn more about current advances. I\u2019ve also been able to conduct my own research and present an abstract based on healthcare communication and access issues for young people with arthritis.<\/p>\n Becoming involved in this project<\/u>: <\/em>I found this opportunity through a young people with arthritis event. When I saw it, I knew I had to get in touch! It\u2019s been a good experience so far! Lianne keeps regular contact and I\u2019ve been able to help review social media, input on survey design and questions, and be involved with paper outputs from the research. I feel like my suggestions have been taken on board and I like that I\u2019ve been able to get involved as much or as little as I\u2019d like.<\/p>\n Before a meeting<\/u>, researchers should:<\/p>\n During meetings<\/u>, researchers should:<\/p>\n Patient partners should not be worried about speaking up in meetings.<\/p>\n After the meeting<\/u>, researchers should:<\/p>\n Patient partners should make sure they\u2019ve understood everything from the meeting, and email afterwards if there are any questions.<\/p>\n From both sides I think we can agree that it all still feels very new, and we all have a lot to learn. The experience has been great so far, and we are both looking forward to seeing how this progresses into the future. To date, this collaboration has resulted in one co-author publication (look out for future blog posts for a sneak peek), one planned joint campaign to understand how researchers use people\u2019s data, as well as pushing this project forward with those with lived experiences at the heart of decision making.<\/p>\n For anyone wanting to get involved in research as a person with lived experiences of the arthritis, most of the national charities have patient partners or groups that you can join, for example Versus Arthritis Patient Partners<\/a>, and JAR VIP Panel<\/a>. Additionally, if you see that some research is being done that is interesting to you, contact the researcher and just ask \u2013 I am sure they would be delighted to point you in the right direction!<\/p>\n [\/et_pb_text][et_pb_post_nav _builder_version=”3.0.106″ in_same_term=”off” show_prev=”on” show_next=”on” prev_text=”Previous” next_text=”Next” locked=”on” parent_locked=”off” \/][et_pb_comments _builder_version=”3.0.106″ show_avatar=”on” show_reply=”on” show_count=”on” background_layout=”light” header_font_size_tablet=”51″ header_line_height_tablet=”2″ custom_button=”on” button_icon_placement=”right” button_text_color=”#ffffff” button_use_icon=”off” locked=”on” parent_locked=”off” button_text_size__hover_enabled=”off” button_text_size__hover=”null” button_one_text_size__hover_enabled=”off” button_one_text_size__hover=”null” button_two_text_size__hover_enabled=”off” button_two_text_size__hover=”null” button_text_color__hover_enabled=”off” button_text_color__hover=”null” 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background_size=”initial”]<\/p>\n +44 (0) 161 306 6000<\/p>\n [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_3″][et_pb_text admin_label=”Find Us Title” global_parent=”380″ background_layout=”dark” text_text_color=”#ffffff” parent_locked=”off” background_position=”top_left” background_repeat=”repeat” background_size=”initial”]<\/p>\n [\/et_pb_text][et_pb_text admin_label=”Address” global_parent=”380″ background_layout=”dark” text_orientation=”left” use_border_color=”off” border_color=”#ffffff” border_style=”solid” module_id=”address” parent_locked=”off” background_position=”top_left” background_repeat=”repeat” background_size=”initial”]<\/p>\n The University of Manchester [\/et_pb_text][\/et_pb_column][et_pb_column type=”1_3″][et_pb_text admin_label=”Connect Title” global_parent=”380″ background_layout=”dark” text_text_color=”#ffffff” parent_locked=”off” background_position=”top_left” background_repeat=”repeat” background_size=”initial”]<\/p>\n [\/et_pb_text][et_pb_code 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A University of Manchester researcher, Lianne, and a patient partner on her research project, Natasha, discuss what it is like working together and what lessons […]<\/p>\n","protected":false},"author":7647,"featured_media":1764,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":" Authors<\/strong>: Lianne Kearsley-Fleet (researcher) and Natasha Shaw (patient partner).<\/p> Researchers are often criticised for working in isolation, looking at outcomes in people they have never even spoken to in real life. A University of Manchester researcher, Lianne<\/a>, and a patient partner on her research project, Natasha, discuss what it is like working together and what lessons they have learnt.<\/p> Prior experiences of patient involvement in research<\/u>: <\/em>I have been researching outcomes in juvenile idiopathic arthritis (JIA) since 2012. However, with the start of my fellowship (my own research project) in 2024 I knew I wanted to include those with lived experiences of JIA as part of a core group of advisors, known as patient partner. I felt that this was particularly important to ensure that the research I did was relevant and important to those living with JIA.<\/p> Recruiting patient partners to be involved<\/u>: <\/em>I assumed it would be extremely challenging to find someone interested to participate as a research partner, a role involving multiple online meetings a year with other members of the research team. However, after reaching out to national arthritis charities to share the opportunity to be a \u2018patient partner\u2019 for my research project, I received many responses of interest.<\/p> My first meeting<\/u>: <\/em>For my first full team meeting with patient partners, researchers, and collaborators, I was extremely nervous. I was aware I had little progress to report and was anxious to not waste everyone\u2019s time. However, I knew the importance of bringing everyone together for the project to succeed and was pleasantly surprised by how engaged each person was during the meeting. Whilst the agenda was minimal, the conversations we had were useful and sparked ideas for what we could do in the future. After the meeting, I spent a lot of time reflecting on the processes and what I could have done better. I emailed the patient partners to get their opinions and have aimed to implement as many of them as possible \u2013 see suggestions below.<\/p> Prior experiences of patient involvement in research<\/u>: <\/em>I am in my late 20s and have had JIA since I was 1 year old, with uveitis on and off. Whilst I\u2019ve been involved in past arthritis research as a study participant through giving samples as a child with my parents\u2019 consent, I\u2019ve not had much direct experience working with arthritis researchers before, so this has been a different aspect for me in my arthritis volunteering. I\u2019ve been involved with arthritis research since around 2021 through volunteering on the Versus Arthritis Young Peoples Panel, and have attended conferences such as BSR and the Adolescent Rheumatology Symposiums to learn more about current advances. I\u2019ve also been able to conduct my own research and present an abstract based on healthcare communication and access issues for young people with arthritis.<\/p> Becoming involved in this project<\/u>: <\/em>I found this opportunity through a young people with arthritis event. When I saw it, I knew I had to get in touch! It\u2019s been a good experience so far! Lianne keeps regular contact and I\u2019ve been able to help review social media, input on survey design and questions, and be involved with paper outputs from the research. I feel like my suggestions have been taken on board and I like that I\u2019ve been able to get involved as much or as little as I\u2019d like.<\/p> Before a meeting<\/u>, researchers should:<\/p> During meetings<\/u>, researchers should:<\/p> Patient partners should not be worried about speaking up in meetings.<\/p> After the meeting<\/u>, researchers should:<\/p> Patient partners should make sure they\u2019ve understood everything from the meeting, and email afterwards if there are any questions.<\/p> From both sides I think we can agree that it all still feels very new, and we all have a lot to learn. The experience has been great so far, and we are both looking forward to seeing how this progresses into the future. To date, this collaboration has resulted in one co-author publication (look out for future blog posts for a sneak peek), one planned joint campaign to understand how researchers use people\u2019s data, as well as pushing this project forward with those with lived experiences at the heart of decision making.<\/p> For anyone wanting to get involved in research as a person with lived experiences of the arthritis, most of the national charities have patient partners or groups that you can join, for example Versus Arthritis Patient Partners<\/a>, and JAR VIP Panel<\/a>. Additionally, if you see that some research is being done that is interesting to you, contact the researcher and just ask \u2013 I am sure they would be delighted to point you in the right direction!<\/p>","_et_gb_content_width":"","_exactmetrics_skip_tracking":false,"footnotes":""},"categories":[23,9],"tags":[],"class_list":["post-1761","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-patient-partners","category-research"],"_links":{"self":[{"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/posts\/1761","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/users\/7647"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/comments?post=1761"}],"version-history":[{"count":6,"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/posts\/1761\/revisions"}],"predecessor-version":[{"id":1768,"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/posts\/1761\/revisions\/1768"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/media\/1764"}],"wp:attachment":[{"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/media?parent=1761"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/categories?post=1761"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-json\/wp\/v2\/tags?post=1761"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}From a researcher\u2019s perspective (Lianne)<\/h3>\n
![\"Dr](\"https:\/\/blogs.manchester.ac.uk\/bsrbr-blog\/wp-content\/uploads\/sites\/440\/2024\/05\/Lianne-picture-200x300.jpg\")
From a Patient Partner\u2019s perspective (Natasha):<\/h3>\n
Call to action!<\/h3>\n
\n
\n
\n
Final remarks<\/h3>\n
Related<\/h1>\n
Related posts:<\/h3>
Celebrate your registers! Collaboration: Collaboration with international research groups<\/h2><\/div><\/div><\/a>
How body weight affects the way people with rheumatoid arthritis react to treatment with tocilizumab<\/h2><\/div><\/div><\/a>
Switching from the original etanercept (the originator) to an etanercept biosimilar for rheumatoid a...<\/h2><\/div><\/div><\/a><\/div>
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<\/a><\/li>\nBackground<\/h3>
From a researcher\u2019s perspective (Lianne)<\/h3>
From a Patient Partner\u2019s perspective (Natasha):<\/h3>
Call to action!<\/h3>
Final remarks<\/h3>