{"id":1493,"date":"2024-09-11T11:38:06","date_gmt":"2024-09-11T10:38:06","guid":{"rendered":"https:\/\/sites.manchester.ac.uk\/health-research-from-home\/?page_id=1493"},"modified":"2026-03-25T12:06:30","modified_gmt":"2026-03-25T12:06:30","slug":"patient-and-public-involvement-and-engagement","status":"publish","type":"page","link":"https:\/\/sites.manchester.ac.uk\/health-research-from-home\/patient-and-public-involvement-and-engagement\/","title":{"rendered":"Patient and public involvement and engagement"},"content":{"rendered":"

[et_pb_section bb_built=”1″ admin_label=”section” fullwidth=”on” next_background_color=”#000000″ global_module=”322″][et_pb_fullwidth_menu global_parent=”322″ _builder_version=”3.0.106″ menu_id=”7″ submenu_direction=”downwards” fullwidth_menu=”off” background_layout=”dark” module_class=”main-navigation” \/][\/et_pb_section][et_pb_section bb_built=”1″ fullwidth=”off” specialty=”off” transparent_background=”off” allow_player_pause=”off” inner_shadow=”off” parallax=”off” parallax_method=”on” make_fullwidth=”off” use_custom_width=”off” width_unit=”on” make_equal=”off” use_custom_gutter=”off” custom_padding=”0px||0px|” custom_css_main_element=”padding-top:0px” module_class=”header-image-section” prev_background_color=”#ffffff” next_background_color=”#ffffff”][et_pb_row allow_player_pause=”off” parallax=”off” parallax_method=”on” parallax_1=”off” parallax_method_1=”off” make_fullwidth=”off” use_custom_width=”off” width_unit=”on” use_custom_gutter=”off” make_equal=”off” custom_margin=”||0px|” custom_padding=”||0px|” module_class=”header-image” background_position=”top_left” background_repeat=”repeat” background_size=”initial”][et_pb_column type=”4_4″][et_pb_image _builder_version=”3.17.6″ src=”https:\/\/sites.manchester.ac.uk\/health-research-from-home\/wp-content\/uploads\/sites\/463\/2024\/09\/patient-and-public-involvement.jpg” \/][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section bb_built=”1″ fullwidth=”off” specialty=”off” transparent_background=”off” allow_player_pause=”off” inner_shadow=”off” parallax=”off” parallax_method=”on” make_fullwidth=”off” use_custom_width=”off” width_unit=”on” make_equal=”off” use_custom_gutter=”off” custom_padding=”||0px|” prev_background_color=”#ffffff” next_background_color=”#ffffff”][et_pb_row allow_player_pause=”off” parallax=”off” parallax_method=”on” parallax_1=”off” parallax_method_1=”off” make_fullwidth=”off” use_custom_width=”off” width_unit=”on” use_custom_gutter=”off” make_equal=”off” custom_margin=”||0px|” custom_padding=”||0px|” module_class=”breadcrumbs-row” background_position=”top_left” background_repeat=”repeat” background_size=”initial”][et_pb_column type=”4_4″][et_pb_text admin_label=”Breadcrumbs (do not remove)” background_layout=”light” text_orientation=”left” use_border_color=”off” border_color=”#ffffff” border_style=”solid” module_class=”breadcrumbs” custom_css_main_element=”border-bottom: 1px solid #ececed;” module_alignment=”left” background_position=”top_left” background_repeat=”repeat” background_size=”initial”]<\/p>\nHealth Research from Home<\/a><\/span><\/span>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section][et_pb_section bb_built=”1″ fullwidth=”off” specialty=”on” transparent_background=”off” allow_player_pause=”off” inner_shadow=”off” parallax=”off” parallax_method=”on” parallax_1=”off” parallax_method_1=”off” parallax_2=”off” parallax_method_2=”off” make_fullwidth=”off” use_custom_width=”off” width_unit=”on” make_equal=”off” use_custom_gutter=”on” gutter_width=”2″ prev_background_color=”#ffffff” next_background_color=”#1d1d1d”][et_pb_column type=”1_3″][et_pb_sidebar admin_label=”Left Nav Sidebar” area=”et_pb_widget_area_1″ orientation=”left” remove_border=”on” background_layout=”light” module_id=”left-nav-menu” show_border=”off” \/][\/et_pb_column][et_pb_column type=”2_3″ specialty_columns=”2″][et_pb_row_inner admin_label=”Row”][et_pb_column_inner type=”4_4″ saved_specialty_column_type=”2_3″][et_pb_text admin_label=”Patient and public involvement and engagement Text” background_layout=”light” text_orientation=”left” use_border_color=”off” module_alignment=”left” background_position=”top_left” background_repeat=”repeat” background_size=”initial” _builder_version=”3.17.6″]<\/p>\n

Patient and public involvement and engagement<\/h1>\n

We know that vital health research can only take place if it is informed and shaped by the people it will ultimately benefit\u2026the public.\u00a0\u00a0<\/p>\n

Successful research isn\u2019t done \u2018to\u2019 patients but created in collaboration \u2018with\u2019 patients. This is especially true of health research using smartphones and wearables as it is fully reliant on active public participation.\u00a0\u00a0<\/p>\n

Health Research from Home strives to work in equal partnership with patients and the public.<\/p>\n

[\/et_pb_text][et_pb_text _builder_version=”3.17.6″]<\/p>\n

PAPrKA – Margie’s story<\/h2>\n

The team have worked with people who have personal experience of knee replacement surgery and\/ or using smartphones and wearables as members of the Patient Advisory Group (PAG).<\/span><\/p>\n

The PAG have been involved in various activities such as commenting on documentation and helping us build the website for PAPrKA. We have also recently discussed the issue of \u201cmissing\u201d data from smartphones and wearables, providing insight from personal experience of using these devices.<\/span>\u00a0<\/span><\/p>\n

Margie, one of the PAG members has shared her personal story, introducing her experience undergoing a total knee replacement in 2022 and subsequent recovery. Margie also tracks her step count through her phone and uses this understanding to reflect on her physical activity changes after surgery.<\/span>\u00a0<\/span><\/p>\n

When did you have your knee replacement?<\/strong><\/p>\n

I had my total knee replacement in 2022. My original problems started after a motor accident in 1994, which broke the top of my tibia and fibula. I was told at the time that I would need a knee replacement in 10 years. I tried to persevere for as long as I could without it and had regular platelet injections in my knee which helped with my pain and mobility. I also tried to keep active. I was doing regular long walks and also progressed to running for short distances.<\/p>\n

What was daily life like for you before your surgery?<\/strong><\/p>\n

I worked as a live-in carer which was physically demanding, over the years my pain increased and walking become increasingly difficult, I tried to push through the pain but it got worse and worse. So I wasn\u2019t very fit at that point. I was having regular cortisone injections and the time gap between each injection was becoming shorter. By the time I had the operation my knee was bone on bone with zero cartilage.<\/p>\n

What were you told about how quickly your mobility would improve after surgery?<\/strong><\/p>\n

I was told that my mobility will improve and that I would need to do sedentary exercises both before and after. I did as much as I could. I was told that I would have to concentrate mainly on the bend. Within 2 months after surgery I had achieved over 75% of the bend and mobility of my knee compared to before my operation. However, during that time I developed calcification in the muscles behind my knee, I had additional physiotherapy treatment for that which helped a lot.<\/p>\n

How has your daily physical activity changed since having the surgery?<\/strong><\/p>\n

Since having the surgery, my knee mobility has improved but I still have pain on the inside of my knee due the calcification. Walking is my main exercise, I build it into my day and when things are going well, I can do around 10,000 steps. I also go on walking holidays 3 or 4 times a year.<\/p>\n

Do you use fitness trackers?<\/strong><\/p>\n

I track my steps through my phone. I\u2019ve tried a few different trackers but I\u2019ve not found them very reliable or accurate, I\u2019d like to have one that I wear as a watch as that be more convenient.<\/p>\n

What\u2019s it like being part of the Research Advisory Group?<\/strong><\/p>\n

This is the first time I\u2019ve been part of anything like this and I’m learning a lot. I think the research that we are advising on could help to improve treatment for everyone, such as the advice that people are given before they have their operation. For example, if I\u2019d known that increasing my mobility before my operation could have improved my recovery, I would have made extra effort to do that at the time.<\/p>\n

I\u2019m interested in whether everyone participating in the study will be able to collect the same type of data if they are using different trackers. Also, in how accessible it will be to take part in the research, especially for patients who aren\u2019t so well off.<\/p>\n

Whilst doctors and nurses are experts, nobody knows as much about a knee replacement than the patient who had been through it, so it\u2019s vital that we are part of this. We have different people on the group sharing their different experiences which is important. Everyone’s journey is different and I like finding out how they coped individually.<\/p>\n

I think the Group helps the researchers to be empathetic to what people are going through. The more understanding that researchers have of people\u2019s differing circumstances and experiences and how to take that account of that in their research, the better the research will be. We also advise the researchers on how to explain things in lay person\u2019s language, if it\u2019s too scientific it doesn\u2019t work so well to get people involved.<\/p>\n

[\/et_pb_text][\/et_pb_column_inner][\/et_pb_row_inner][\/et_pb_column][\/et_pb_section][et_pb_section bb_built=”1″ admin_label=”Connect Title” custom_padding=”0px||0px|” _builder_version=”3.0.90″ background_color=”#1d1d1d” module_class=”footer-section” prev_background_color=”#ffffff” global_module=”380″][et_pb_row admin_label=”row” global_parent=”380″ locked=”off” allow_player_pause=”off” parallax=”off” parallax_method=”on” parallax_1=”off” parallax_method_1=”off” parallax_2=”off” parallax_method_2=”off” parallax_3=”off” parallax_method_3=”off” make_fullwidth=”off” use_custom_width=”off” width_unit=”on” use_custom_gutter=”off” make_equal=”off” module_id=”footer-row” _builder_version=”3.0.89″][et_pb_column type=”1_3″][et_pb_text admin_label=”Contact 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” _builder_version=”3.17.6″]<\/p>\n

Contact Us<\/h4>\n

[\/et_pb_text][et_pb_text admin_label=”Contact Us” global_parent=”380″ text_text_color=”#aaaaaa” parent_locked=”off” background_layout=”light” text_orientation=”left” use_border_color=”off” module_class=”contact-us” background_position=”top_left” background_repeat=”repeat” background_size=”initial” _builder_version=”3.17.6″]<\/p>\n

Email:\u00a0hrfh@manchester.ac.uk<\/a><\/p>\n

\"\"<\/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

Find Us<\/h4>\n

[\/et_pb_text][et_pb_text admin_label=”Address” global_parent=”380″ background_layout=”dark” text_orientation=”left” use_border_color=”off” module_id=”address” parent_locked=”off” background_position=”top_left” background_repeat=”repeat” background_size=”initial” _builder_version=”3.17.6″]<\/p>\n

3rd Floor
Christabel Pankhurst Institute
Dover Street
Manchester
M13 9PS
UK<\/a><\/p>\n

\u00a0<\/p>\n

[\/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

Connect With Us<\/h4>\n

[\/et_pb_text][et_pb_code admin_label=”Social Media” global_parent=”380″ parent_locked=”off” _builder_version=”3.17.6″]<\/p>\n