![\"\"](\"https:\/\/blogs.manchester.ac.uk\/bmh-sr\/wp-content\/uploads\/sites\/178\/2023\/11\/SR-blog-image-template-300x200.png\")
Stephanie Shoop Worrall receiving her award [image courtesy of NIHR CRN GM]<\/p><\/div>\n
Blog by Dr Jo Pennock, Senior Lecturer and Social Responsibility Director for School of Biological Sciences.<\/b>\u00a0<\/p>\n
In this blog, <\/i>Dr Jo Pennock<\/i><\/a> interviews <\/i>Dr Stevie Shoop-Worrall<\/i><\/a>, Career Development Research Fellow, Division of Musculoskeletal & Dermatological Sciences and winner at the <\/i>Greater Manchester Health and Care Research Awards 2023<\/i><\/a>.<\/i>\u00a0<\/p>\n Hi Stevie, congratulations on your award! Could I start by asking you about your role here at the University?<\/b>\u00a0<\/p>\n I am a Medical Research Council (MRC) funded epidemiologist and data scientist, currently working on finding clusters of people with psoriatic arthritis who could benefit from different treatments. I am analysing clinical and some biological\/genetic data from about 2000 people with psoriatic arthritis across the life course, from seven different countries including data from here in Manchester. I am particularly interested in childhood arthritis which is a disease really lacking in visibility and one that can cause physical disability, intense pain and fatigue which has a huge impact on children\u2019s lives.\u00a0<\/p>\n How did this project come about?<\/b>\u00a0<\/p>\n In 2020 I held a series of discussions with children, young people and adults with psoriatic arthritis, alongside their families and carers about research ideas. We talked about whether they thought stratification of treatments and a life course approach would be helpful for their\/their children\u2019s disease, and what the barriers to these might be. I accessed funded groups through the CLUSTER consortium and associated charities, Your Rheum, BANNAR and BritPACT. This was a great way to access networks of people with psoriatic arthritis across the life course and meant I could talk with both children and adults about their views on current treatments and research.\u00a0\u00a0<\/p>\n What was the impact of talking to the patients for you?<\/b>\u00a0<\/p>\n Well, it isn\u2019t that common to include children in patient involvement, particularly for data scientists. We were able to get both adult and children\u2019s opinions on current treatments and their own treatment needs. For instance, the first main treatment for psoriatic arthritis, Methotrexate, does not work for two thirds of people that take it. Side effects can include debilitating nausea which has a huge impact on both school attendance and socialisation in children as the treatment is given weekly with some parents reporting up to five days of nausea for their children.\u00a0\u00a0<\/p>\n There is a strong sense of injustice around this impact particularly when the treatment is not working.\u00a0 There is currently no way of identifying the people who will respond to this treatment. Talking to people with psoriatic arthritis across the life course sparked ideas that directly led to my MRC Career Development Fellowship which was awarded in 2022. It also led to a viewpoint manuscript co-written with young people with arthritis about how to involve children and young people in machine learning research.\u00a0\u00a0<\/p>\n Do you still do PPIE as part of your fellowship?<\/b>\u00a0<\/p>\n Yes! We are about one year into the fellowship and patients are still involved. Guidelines say that disease models should be selected by researchers based on clinical plausibility, but what does that mean? I have involved people with psoriatic arthritis of all ages in the selection of the significant disease models I have generated, based on their own lived experience.\u00a0\u00a0<\/p>\n Do you have any advice for researchers wanting to start patient involvement?<\/b>\u00a0<\/p>\n Final thoughts from Stevie:\u00a0<\/b>\u00a0<\/p>\n \u2018\u2019Although involving children does come with challenges, young people in particular really want to contribute and to be heard. I really think that not involving children in PPIE is a huge injustice; we should be aiming for \u2018nothing about us without us\u2019. Why should we be planning research that affects people\u2019s lives without their input?\u2019\u2019<\/i>\u00a0<\/p>\n Follow Stevie on X (formally Twitter): @sshoopworrall<\/a>\u00a0\u00a0<\/p>\n This award was sponsored by Parexel and presented by Andrew Boden, Parexel\u2019s Associate Director for Site Alliances. Find out more about the award on the NIHR website<\/a>.\u00a0<\/p>\n To find out more about PPIE: watch our short film<\/a>, sign up to the monthly Public Engagement Digest<\/a>, visit the PPIE blog<\/a>, follow @FBMH_SR<\/a>, visit our PPIE Toolkit<\/a> or contact srbmh@manchester.ac.uk<\/a>.\u00a0\u00a0\u00a0<\/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” button_one_text_color__hover_enabled=”off” button_one_text_color__hover=”null” button_two_text_color__hover_enabled=”off” button_two_text_color__hover=”null” button_border_width__hover_enabled=”off” button_border_width__hover=”null” button_one_border_width__hover_enabled=”off” button_one_border_width__hover=”null” button_two_border_width__hover_enabled=”off” button_two_border_width__hover=”null” button_border_color__hover_enabled=”off” button_border_color__hover=”null” button_one_border_color__hover_enabled=”off” button_one_border_color__hover=”null” button_two_border_color__hover_enabled=”off” button_two_border_color__hover=”null” button_border_radius__hover_enabled=”off” button_border_radius__hover=”null” button_one_border_radius__hover_enabled=”off” button_one_border_radius__hover=”null” button_two_border_radius__hover_enabled=”off” button_two_border_radius__hover=”null” button_letter_spacing__hover_enabled=”off” button_letter_spacing__hover=”null” button_one_letter_spacing__hover_enabled=”off” button_one_letter_spacing__hover=”null” button_two_letter_spacing__hover_enabled=”off” button_two_letter_spacing__hover=”null” button_bg_color__hover_enabled=”off” button_bg_color__hover=”null” button_one_bg_color__hover_enabled=”off” button_one_bg_color__hover=”null” button_two_bg_color__hover_enabled=”off” button_two_bg_color__hover=”null” \/][et_pb_text admin_label=”Related posts” _builder_version=”3.0.106″ background_layout=”light” locked=”on” parent_locked=”off”]<\/p>\n [\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][et_pb_column type=”1_3″][et_pb_sidebar _builder_version=”3.0.106″ area=”sidebar-1″ orientation=”left” show_border=”off” background_layout=”light” locked=”on” \/][\/et_pb_column][\/et_pb_section][et_pb_section bb_built=”1″ admin_label=”Connect Title” module_class=”footer-section” _builder_version=”3.17.6″ background_color=”#1d1d1d” custom_padding=”0px||0px|” prev_background_color=”#ffffff” global_module=”380″][et_pb_row admin_label=”row” global_parent=”380″ parallax_method_1=”off” parallax_method_2=”off” parallax_method_3=”off” module_id=”footer-row” _builder_version=”3.17.6″ locked=”off”][et_pb_column type=”1_3″][et_pb_text admin_label=”Contact Us Title” global_parent=”380″ _builder_version=”3.17.6″ text_text_color=”#ffffff” background_size=”initial” background_position=”top_left” background_repeat=”repeat” background_layout=”dark”]<\/p>\n [\/et_pb_text][et_pb_text admin_label=”Contact Us” global_parent=”380″ _builder_version=”3.17.6″ text_text_color=”#ffffff” background_size=”initial” background_position=”top_left” background_repeat=”repeat” background_layout=”dark”]<\/p>\n \u00a0<\/p>\n The Social Responsibility Public Engagement Digest<\/span>: https:\/\/www.bmh.manchester.ac.uk\/connect\/social-responsibility\/contact\/<\/a><\/p>\n The Faculty Website<\/span>: https:\/\/www.bmh.manchester.ac.uk\/connect\/social-responsibility\/public-patients\/<\/a><\/p>\n\n
Related<\/h1>\n
Related posts:<\/h3>
Public and Patient Involvement and Engagement (PPIE) Forum March 2024 update<\/h2><\/div><\/div><\/a>
Could precision breath analysis make diagnosing asthma easier?<\/h2><\/div><\/div><\/a>
The Faculty\u2019s First Zoom PPIE Celebration Event<\/h2><\/div><\/div><\/a><\/div>
Further information<\/span><\/h4>\n