@InvolvePatients

Anna & Linda share experiences about involvement in #healthcare #research with #researchers, #patientadvocates & the #public #patientinvolvement #CancerResearch

 UK
Joined May 2020
  • Tweets3.6K
  • Following876
  • Followers620
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Hello everyone, we are Anna and Linda, taking over this account to tweet about great resources and our thoughts about #public #patientinvolvement in #healthcare #research #CancerResearch #bloodcancer #bloodtransfusion #DataScience This is us👇
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'Frameworks to evaluate the quality of public involvement in health & social care research: a scoping review'. New paper in Health Expectations onlinelibrary.wiley.com/doi/… open access!!

Frameworks to Evaluate the Quality of Public Involvement in Health and Social Care Research: A...

Introduction Public involvement (PI) in health and social care research is well established. However, questions remain about the quality of PI activities and the consistency with which high-quality...

onlinelibrary.wiley.com
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Involved in Research retweeted
Sickle Cell Society@SickleCellUKMay 8
Men aged 35+ attending KCH Hospital are invited to the final Ageing Well with Sickle Cell focus group. 28 May | ⏰ 6–8pm 🎟 £50 Love2shop voucher for attendees. Can’t attend? Share your thoughts here: buff.ly/QiBEtEC 🔗 Book now: buff.ly/ZwT8K81 #SickleCell
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We need your help 📌 @LindAlliance survey on transfusion #research priorities closes 31st May 🚨 A great response so far however to ensure fair representation we’re particularly needing to hear from surgeons 🚨 #surgeons please share forms.office.com/e/6HV3qGgNY…
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As someone in remission from AML this downloadable journal is packed with really helpful prompts to help you write things down to relieve your brain 🧠 of the ‘noise’ we all know well… take a look at what I’ve written… (in replies) #AMLWorldAwarenessDay #leukaemia #KnowAML
Know AML 🔴⚫️
@KNOW_AMLApr 21
📝 Using our downloadable journal can be an incredible way to reflect on your personal journey with AML. If you feel comfortable, please share them with us using the hashtags #KnowAML and #AMLWorldAwarenessDay bit.ly/4sPGdUT #Cancer #Leukemia #Leucemia
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Involved in Research retweeted
Know AML 🔴⚫️
@KNOW_AMLApr 21
🎥 Make a difference this AML World Awareness Day and share this video clip of Erik Aerts and Charles Craddock explaining the signs and symptoms of AML. Want to watch the whole video? Visit: bit.ly/4sPGdUT #KnowAML #AMLWorldAwarenessDay #Cancer #Leukemia #Leucemia #Leukaemia
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Involved in Research retweeted
Know AML 🔴⚫️
@KNOW_AMLApr 21
📝 Using our downloadable journal can be an incredible way to reflect on your personal journey with AML. If you feel comfortable, please share them with us using the hashtags #KnowAML and #AMLWorldAwarenessDay bit.ly/4sPGdUT #Cancer #Leukemia #Leucemia
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Involved in Research retweeted
Sickle Cell Society@SickleCellUKMar 30
📣 Join our Sickle Cell Engagement Event 📅 16 May 2026 | 🕛 12–3pm 📍 St Thomas’ Hospital or online Share your experiences and help shape better care. Register: In person: buff.ly/BGDZQVz Virtual: buff.ly/Cith4BM #SickleCell #PatientVoice #LondonEvents
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📢 We've increased the payment rate for public involvement within the NIHR by 10%. The rate will also be reviewed every 3 years from 2025. We gain so much from the insights provided by the public. The new rate better recognises the importance of how the public shapes our research. Find out more: nihr.ac.uk/news/nihr-increas…
NIHR logo. "Public involvement is an NIHR priority and improves the relevance and quality of our research. That is why it is so vital to recognise those who use their experiences to shape life-changing NIHR research." Professor Lucy Chappell Chief Scientific Advisor to the Department of Health and Social Care and Chief Executive Officer of the NIHR Photograph of Lucy Chappell.

ALT NIHR logo. "Public involvement is an NIHR priority and improves the relevance and quality of our research. That is why it is so vital to recognise those who use their experiences to shape life-changing NIHR research." Professor Lucy Chappell Chief Scientific Advisor to the Department of Health and Social Care and Chief Executive Officer of the NIHR Photograph of Lucy Chappell.

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📢A new book exploring meaningful Public Involvement & Community Engagement (PICE) in research, launches today. 🎯Aimed at researchers who want to ensure that their work is inclusive, equitable, and impactful. 📑Find out more & read via open access⬇️ tinyurl.com/3yr38bhe
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📣 Calling early career nurses & midwives! Join our webinar on 3 Dec at 2pm to explore the latest NIHR RfPB funding - up to £500k for research led by under-represented health & care professionals. Expert tips from @NIHR_RSS included! nihr.ac.uk/funding/rfpb-unde…
A promotional graphic for a webinar organized by the National Institute for Health and Care Research (NIHR). The webinar is titled "NIHR RfPB under-represented disciplines and specialisms series: Nurses and Midwives" and is scheduled for Wednesday, December 3, 2025, from 2 pm to 3 pm. The design features a navy blue background with light pink accents and an icon of a calendar.

ALT A promotional graphic for a webinar organized by the National Institute for Health and Care Research (NIHR). The webinar is titled "NIHR RfPB under-represented disciplines and specialisms series: Nurses and Midwives" and is scheduled for Wednesday, December 3, 2025, from 2 pm to 3 pm. The design features a navy blue background with light pink accents and an icon of a calendar.

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🩸Ever wondered what really goes on behind the scenes of the blood service? Our latest seminar is now on YouTube Amanpreet Dhesi & Debbie Rahman (NHSBT) share how blood supply works, the challenges, and how R&D is transforming the service ▶️ Watch here tinyurl.com/yaur5s3b
Close up scientist hand holding red blood bag in storage blood refrigerator at blood bank unit laboratory.Doctor selecting fresh donor blood for transfusion.Save life and medical treatment concept.

ALT Close up scientist hand holding red blood bag in storage blood refrigerator at blood bank unit laboratory.Doctor selecting fresh donor blood for transfusion.Save life and medical treatment concept.

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Involved in Research retweeted
NIHR Involvement@NIHRinvolvement19 May 2025
Are you a patient, member of the public or carer looking for an opportunity to get involved? Or a researcher with an opportunity for people to get involved in your work? Head over to People in Research to browse and post opportunities: peopleinresearch.org/
Find opportunities. "I want to get involved". Add opportunities. "I want people involved".

ALT Find opportunities. "I want to get involved". Add opportunities. "I want people involved".

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Involved in Research retweeted
LBC News Wales@LBCNewsWales20 May 2025
Researchers at Cardiff Uni have been awarded £750,000 pounds to trial a new treatment for a rare form of the disease. The money - from Blood Cancer UK - will be used to test a new at-home solution for acute promyelocytic leukaemia.
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Involved in Research retweeted
Know AML 🔴⚫️
@KNOW_AML20 May 2025
During the recent @Know_AML webinar for patients and HCPs, @charliecraddock, physician at Queen Elizabeth Hospital Birmingham and Know AML Ambassador, discussed mutations in AML and their role in diagnosis and personalized treatment decisions. 👉 loom.ly/Kp4ZiIQ #KnowAML
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Involved in Research retweeted
CTRCardiffUni@CTRCardiffUni20 May 2025
💬 “We’re seeking to improve quality of life…so patients can return to normal sooner.” — Prof Steve Knapper Read how this study could shift the standard for APL care nationwide 🔗 bloodcancer.org.uk/news/new-… @ResearchWales @UKCTUNetwork @bloodcancer_uk #ICTD25 #CancerResearch 🧬

Blood Cancer UK | New at-home treatment trialled in Cardiff could revolutionise care for rare blood...

On Clinical Trials Day, Blood Cancer UK announces a £750k award for researchers at Cardiff University to conduct a clinical trial testing a new treatment to be taken at home. This exciting new...

bloodcancer.org.uk
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Almost 100 people donated blood at a session supported by Elsie Dot Stancombe's family, one of the young victims of the tragic Southport attack last summer. ❤️ More than a quarter were first-time donors! 🩸
Staff at a special donation session supported by the family of Elsie Dot Stancombe, one of the victims of the tragic Southport attacks, are joined by her mum and dad, Jenni and Dave in a group photo.

ALT Staff at a special donation session supported by the family of Elsie Dot Stancombe, one of the victims of the tragic Southport attacks, are joined by her mum and dad, Jenni and Dave in a group photo.

Photo of the special donation session which was set up with the support of the family of Elsie Dot Stancombe.

ALT Photo of the special donation session which was set up with the support of the family of Elsie Dot Stancombe.

A banner supplied by the Elsie's Story charity, outside the blood donation session held in her memory.

ALT A banner supplied by the Elsie's Story charity, outside the blood donation session held in her memory.

Steve Kuypers, one of our blood delivery drivers, seen in the donation chair, making his first ever blood donation.

ALT Steve Kuypers, one of our blood delivery drivers, seen in the donation chair, making his first ever blood donation.

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Involved in Research retweeted
CTRCardiffUni@CTRCardiffUni20 May 2025
🧪Backed by £750k from @BloodCancer_UK, this new trial is testing a more convenient oral APL treatment. Same impact. Less hospital time. More quality of life. 🔗 bloodcancer.org.uk/news/new-… @ResearchWales @UKCTUNetwork @cardiffuni #ClinicalTrials #ICTD2025 💡🏠

Blood Cancer UK | New at-home treatment trialled in Cardiff could revolutionise care for rare blood...

On Clinical Trials Day, Blood Cancer UK announces a £750k award for researchers at Cardiff University to conduct a clinical trial testing a new treatment to be taken at home. This exciting new...

bloodcancer.org.uk
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Involved in Research retweeted
Blood Cancer UK@bloodcancer_uk20 May 2025
We’re proud to celebrate Clinical Trials Day, as we commit to investing in even more world-class trials over the next few years. Dr Rubina Ahmed, our Director of Research, Policy and Services, shares why 👇 #CTD2025 1/7
Graphic image on the left reads: "I see clinical trials as fundamental to how we discover new treatments and make them accessible to all who need them." and on the right is a picture of Dr Rubina Ahmed, Director of Research, Policy and Services at Blood Cancer UK

ALT Graphic image on the left reads: "I see clinical trials as fundamental to how we discover new treatments and make them accessible to all who need them." and on the right is a picture of Dr Rubina Ahmed, Director of Research, Policy and Services at Blood Cancer UK

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Involved in Research retweeted
Cure Leukaemia
@CureLeukaemia20 May 2025
On #InternationalClinicalTrialsDay we're celebrating the life-saving difference clinical trials make through our funding of the Trials Acceleration Programme. cureleukaemia.co.uk/communit…
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Involved in Research retweeted
Cure Leukaemia
@CureLeukaemia17 Apr 2025
4 days to World AML Day 🧡 When Lee's wife was diagnosed with Acute Myeloid Leukaemia, he became a full-time caregiver overnight. “Nothing prepares you… You feel helpless, anxious, and alone while trying to stay strong.” Read his Q&A on our website: cureleukaemia.co.uk/communit…
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