#WeDocs - Wednesday 7th September 2016 8pm (GMT Standard Time)
The value of involving patients in NHS led health research
If you haven't joined in a tweet chat before it's very simple. Here's a guide Tweet
Chat Details
Hosted by WeDocs using #WeDocs
This chat is guest hosted by @RCPhysicians
Evidence shows that patients receiving care in NHS facilities that support research experience better outcomes. However hospitals are failing to harness the enthusiasm of patients to be involved in clinical research: only one in three patients surveyed as part of the 2014 Cancer Patient Experience Survey report having a discussion with their doctor about clinical research.
While public confidence in health research continues to increase, it is important to the credibility of research activity that it is seen to be addressing needs and priorities that matter to patients and their families. Analysis by the James Lind Alliance shows that while patients and health professionals frequently prioritise non-drug treatment research, most research is focussed on the evaluation of drugs.
The NHS and its workforce can play an important role in ensuring that research becomes increasing aligned with the priorities of patients and carers and in ensuring their involvement in the way studies are designed. NHS teams can also make sure that their research activities are communicated to patients, actively enable their patients to contribute to research, and make the results of this research more accessible to the communities they serve.
In this Twitter chat we will encourage participants (patients, carers, healthcare professionals and NHS mangers) to share good practice examples of patient involvement in research design and research activity. We will be generating discussion about how healthcare professionals can engage patients with research more effectively, including the resources and the support they need from NHS trusts to do this.
We'll be exploring the following questions:
1) Do you as a doctor have tips for others on how to get started with patient involved (PPI) research?
2) Can you describe the value that effective PPI has had on your research?
3) What barriers do doctors experience when involving patients in research?
4)What are some of the barriers for patients?
5) How can the NHS develop a culture that encourages partnership working between patients and doctors in research?
6) Can hospitals do more to better promote research to patients?
Relevant reading:
RCP Future Hospital Journal article ‘Hospitals should be at the heart of Britain’s world-beating partnership with patients in research’ by Simon Denegrihttp://futurehospital.rcpjournal.org/content/3/2/139.full.pdf+html
National Institute for Health Research INVOLVE resourceshttp://www.invo.org.uk/resource-centre/
James Lind Alliance http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/
Proposed lead contributors:
RCP London @RCPLondon (host)
Simon Denegri, chair of INVOLVE @SDenegri
James Lind Alliance @LindAlliance
@WeDocs host Dr Olwen Williams
Chat Contributers
100 Tweets
200 Tweets
20000 Impressions
20000 Impressions
20000 Impressions
Engagement Wheel
Chat Word Cloud
Participant bio cloud
Chat Summary
Coming soon
Post Chat Comments
After the chat you may like to add a reflection, add some questions, or maybe you've made a change from something you leant on the chat...well now you can with "post chat comments" below.
You'll need to be logged into via Twitter from the main menu, then you can share your post chat comments...
You'll need to be logged into via Twitter from the main menu, then you can share your post chat comments...
|
@{{Comment.screenName}}
{{Comment.DateCreated | date:"dd MMMM yyyy HH:mm"}}
|
{{Comment.Comment}} |
#WeDocs transcript
|
@WeDocs
07 September 2016 20:00
|
|
Welcome to @RCPLondon @WeDocs chat Please use #WeDocs with all your tweets 1/2 https://t.co/fuQ7QGT495 |
|
@WeDocs
07 September 2016 20:00
|
|
Please 'give us a wave' ???? Introduce yourself, what you do & where you are from #WeDocs 2/2 |
|
@eczemasupport
07 September 2016 20:01
|
|
@OlwenOlwen @WeDocs @RCPLondon @AlysColeKing Are we on? #wedocs |
|
@mynameisAndyJ
07 September 2016 20:01
|
|
RT @WeDocs: Please 'give us a wave' ???? Introduce yourself, what you do & where you are from #WeDocs 2/2 |
|
@RCPhysicians
07 September 2016 20:01
|
|
Hi, Jayne Black, policy adviser for research at RCP here – I’ll be tweeting as JB #wedocs |
|
@eczemasupport
07 September 2016 20:02
|
|
@WeDocs patient passionate about patient and carer involvement in research #WeDocs |
|
@annagloyn
07 September 2016 20:02
|
|
RT @DUK_research: This is happening tonight at 8pm! Tune into #WeDocs #PublicInvolvement #PPI #research #NIHR https://twitter.com/OfficialNIHR/status/770245203932446720 |
|
@drol007
07 September 2016 20:02
|
|
@WeDocs evening - Ollie - dr from UK not interested in any baking programs #WeDocs |
|
@SDenegri
07 September 2016 20:03
|
|
@eczemasupport @OlwenOlwen @WeDocs @RCPLondon @AlysColeKing Yes we are I believe. #wedocs hi there |
|
@RCPhysicians
07 September 2016 20:03
|
|
Hi everyone. would you like to let us know who is joining tonight #wedocs |
|
@ej136709
07 September 2016 20:03
|
|
@WeDocs #WeDocs hello Ella here from @RCPLondon's #FutureHospital team |
|
@WeDocs
07 September 2016 20:04
|
|
RT @RCPLondon: Hi everyone. would you like to let us know who is joining tonight #wedocs |
|
@WeDocs
07 September 2016 20:05
|
|
I'm @OlwenOlwen tweeting on behalf @WeDocs #WeDocs |
|
@RCPhysicians
07 September 2016 20:05
|
|
Welcome to our guest panellist & #patient involvement in #research expert @SDenegri - thanks for joining our #WeDocs #twitterchat tonight |
|
@WeDocs
07 September 2016 20:05
|
|
Our first question will come from @RCPLondon team #WeDocs |
|
@RCPhysicians
07 September 2016 20:05
|
|
Hi everyone - to open, are there any #wedocs joining us with tips to share on how to involve #patients in #research? #futurehospital |
|
@campbell_sl
07 September 2016 20:05
|
|
#WeDocs evening all. Sarah from #futurehospital team here |
|
@RCPhysicians
07 September 2016 20:05
|
|
Welcome to you all #wedocs |
|
@WeDocs
07 September 2016 20:06
|
|
RT @eczemasupport: @WeDocs patient passionate about patient and carer involvement in research #WeDocs |
|
@RCPhysicians
07 September 2016 20:06
|
|
What are people's experiences of the challenges when involving #patients in research? #wedocs #futurehospital |
|
@LindsayTurnerPM
07 September 2016 20:06
|
|
RT @RCPLondon: Hi everyone - to open, are there any #wedocs joining us with tips to share on how to involve #patients in #research? #future… |
|
@WeDocs
07 September 2016 20:07
|
|
First Question #WeDocs https://twitter.com/rcplondon/status/773598320371662849 |
|
@drol007
07 September 2016 20:08
|
|
#wedocs oops https://twitter.com/drol007/status/773598675893379072 |
|
@bill_russell3
07 September 2016 20:08
|
|
@WeDocs #WeDocs hi all, Bill here. Ex NHS scientist, done some research, as lay person tried to initiate some research locally - failed :-) |
|
@drol007
07 September 2016 20:09
|
|
RT @WeDocs: First Question #WeDocs https://twitter.com/rcplondon/status/773598320371662849 |
|
@SDenegri
07 September 2016 20:09
|
|
Hi Bill - what were the main barriers for you? #wedocs how can we remedy them? https://t.co/48v0NJB7ot |
|
@drol007
07 September 2016 20:10
|
|
@SDenegri @RCPLondon applies to all #WeDocs not to mention the regulation and effort involved even in funding applications let alone studies |
|
@eczemasupport
07 September 2016 20:10
|
|
#WeDocs Involving patients in research needs confidence of researchers/clinicians and also of patients |
|
@WeDocs
07 September 2016 20:10
|
|
@drol007 @RCPLondon @PeolcPSP @LindAlliance interesting - how did that go? #WeDocs |
|
@WeDocs
07 September 2016 20:10
|
|
@bill_russell3 hello & welcome! #WeDocs |
|
@WeDocs
07 September 2016 20:11
|
|
RT @OlwenOlwen: Ok 2 I-pads lined up Coffee made ?? It could be a pretty lively @WeDocs @RCPLondon chat #WeDocs?? Glad I've got @AlysCole… |
|
@drol007
07 September 2016 20:11
|
|
@WeDocs @RCPLondon @PeolcPSP @LindAlliance interesting- the top 10 questions were about service and continuity of care #WeDocs |
|
@WeDocs
07 September 2016 20:12
|
|
@OlwenOlwen @RCPLondon @AlysColeKing or so Olwen thinks!! ?? may be ???? ! seriously though it's an important chat & hello everyone! #WeDocs |
|
@arc_wessex
07 September 2016 20:12
|
|
RT @SDenegri: Hi Bill - what were the main barriers for you? #wedocs how can we remedy them? https://twitter.com/bill_russell3/status/773598904130629632 |
|
@WeDocs
07 September 2016 20:12
|
|
RT @drol007: @WeDocs @RCPLondon @PeolcPSP @LindAlliance interesting- the top 10 questions were about service and continuity of care #WeDocs |
|
@WeDocs
07 September 2016 20:13
|
|
@drol007 @RCPLondon @PeolcPSP @LindAlliance Any major barriers? #WeDocs |
|
@mancunianmedic
07 September 2016 20:13
|
|
@campbell_sl #wedocs Hello everyone - David Oliver here @RCPLondon Vice Pres and @gerisoc Pres as well as jobbing geriatrician/physician |
|
@WeDocs
07 September 2016 20:13
|
|
@ellacjackson @RCPLondon hello! ???? #WeDocs |
|
@SDenegri
07 September 2016 20:13
|
|
IMO essential 4 hospital leadership 2 buy into it - patient voice needs to be heard at Board level #wedocs https://twitter.com/eczemasupport/status/773599254824624128 |
|
@drol007
07 September 2016 20:14
|
|
@WeDocs @RCPLondon @PeolcPSP @LindAlliance translation into funding calls for specific questions @OfficialNIHR @mariecurieuk #wedocs |
|
@RCPhysicians
07 September 2016 20:14
|
|
Time to do research and speak to patients about opportunities can be a barrier - shown in Research for all http://goo.gl/b9XCaa #wedocs |
|
@WeDocs
07 September 2016 20:14
|
|
Welcome everyone Reminder of first question needed? #WeDocs |
|
@RCPhysicians
07 September 2016 20:14
|
|
RT @eczemasupport: #WeDocs Involving patients in research needs confidence of researchers/clinicians and also of patients |
|
@WeDocs
07 September 2016 20:14
|
|
@eczemasupport @RCPLondon hello & thanks for joining! ????#WeDocs |
|
@drol007
07 September 2016 20:15
|
|
RT @SDenegri: IMO essential 4 hospital leadership 2 buy into it - patient voice needs to be heard at Board level #wedocs https://t.co/WNgW… |
|
@ej136709
07 September 2016 20:15
|
|
More info about Priority Setting Partnerships here http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htm #WeDocs https://twitter.com/drol007/status/773599685026189312 |
|
@RCPhysicians
07 September 2016 20:15
|
|
Can anyone describe how involving #patients has benefitted their research? #wedocs #futurehospital |
|
@drol007
07 September 2016 20:15
|
|
RT @ellacjackson: More info about Priority Setting Partnerships here http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htm #WeDocs https://twitter.com/drol007/status/773599685026189312 |
|
@bill_russell3
07 September 2016 20:16
|
|
@SDenegri @WeDocs #wedocs It was over 10 yrs ago Ethics cmmtt didnt understand need to gather patient experience of LTC Now its essential! |
|
@WeDocs
07 September 2016 20:16
|
|
Important issue #time #WeDocs #FutureHospital https://twitter.com/rcplondon/status/773600324338737152 |
|
@WeDocs
07 September 2016 20:16
|
|
@SDenegri hello & thanks for joining! #WeDocs |
|
@eczemasupport
07 September 2016 20:16
|
|
@SDenegri pull seems to mainly come from funders and then as researchers realsie the value - researchers themselves? #WeDocs |
|
@WeDocs
07 September 2016 20:16
|
|
RT @mancunianmedic: @campbell_sl #wedocs Hello everyone - David Oliver here @RCPLondon Vice Pres and @gerisoc Pres as well as jobbing geria… |
|
@RCPhysicians
07 September 2016 20:16
|
|
RT @ellacjackson: More info about Priority Setting Partnerships here http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/about-psps.htm #WeDocs https://twitter.com/drol007/status/773599685026189312 |
|
@WeDocs
07 September 2016 20:16
|
|
Second question #WeDocs https://twitter.com/rcplondon/status/773600658612158464 |
|
@WeDocs
07 September 2016 20:17
|
|
RT @drol007: @SDenegri @RCPLondon applies to all #WeDocs not to mention the regulation and effort involved even in funding applications let… |
|
@drol007
07 September 2016 20:17
|
|
RT @WeDocs: Important issue #time #WeDocs #FutureHospital https://twitter.com/rcplondon/status/773600324338737152 |
|
@WeDocs
07 September 2016 20:17
|
|
RT @bill_russell3: @SDenegri @WeDocs #wedocs It was over 10 yrs ago Ethics cmmtt didnt understand need to gather patient experience of LTC… |
|
@mancunianmedic
07 September 2016 20:17
|
|
@RCPLondon #wedocs i'll set out some broad ways in which patients (and carers/families/parents - lets always remember) can be involved |
|
@SandraARegan
07 September 2016 20:17
|
|
@WeDocs #WeDocs hello Sandra here, I work @OxfordBRC to support patient involvement and also @LindAlliance |
|
@mancunianmedic
07 September 2016 20:18
|
|
@RCPLondon #wedocs 1. Measuring/designing/reporting outcome that matter to patients - PREMS/PROMS/feedback on research proceess |
|
@SDenegri
07 September 2016 20:18
|
|
@RCPLondon 5 things - awareness, giving ppl the opp, staff caring about it, using patient insight and acknowledging patient role #WeDocs |
|
@WeDocs
07 September 2016 20:18
|
|
Fascinating - researchers as laggards? #WeDocs https://twitter.com/eczemasupport/status/773600911373570048 |
|
@everything_teal
07 September 2016 20:18
|
|
#wedocs To aid early diagnosis of #OvarianCancer here are 10 top tips from @TargetOvarian that #GPs should know http://www.targetovariancancer.org.uk/sites/default/files/Ovarian%20cancer%20information/Primary-care-10-top-tips-for-GPs-about-ovarian-cancer.pdf |
|
@mancunianmedic
07 September 2016 20:19
|
|
@RCPLondon #wedocs 2. Involving as co-researchers e.g. in interviews/observation 3. In co-designing the research 4. In governance/steering |
|
@WeDocs
07 September 2016 20:19
|
|
Yes agree - vital recognise the crucial role carers have & as such important insights. Any carers on chat? #wedocs https://twitter.com/mancunianmedic/status/773601069272268800 |
|
@mancunianmedic
07 September 2016 20:19
|
|
@RCPLondon #wedocs 5. In ensuring the language used is understanable, acessibble, patient centred 6. In communication of findings. All valid |
|
@WeDocs
07 September 2016 20:19
|
|
RT @SandraARegan: @WeDocs #WeDocs hello Sandra here, I work @OxfordBRC to support patient involvement and also @LindAlliance |
|
@WeDocs
07 September 2016 20:20
|
|
RT @everything_teal: #wedocs To aid early diagnosis of #OvarianCancer here are 10 top tips from @TargetOvarian that #GPs should know https:… |
|
@WeDocs
07 September 2016 20:20
|
|
@everything_teal @TargetOvarian how have you involved patients in research? #WeDocs |
|
@RCPhysicians
07 September 2016 20:20
|
|
RT @mancunianmedic: @RCPLondon #wedocs 1. Measuring/designing/reporting outcome that matter to patients - PREMS/PROMS/feedback on research… |
|
@drol007
07 September 2016 20:20
|
|
@SDenegri @RCPLondon absolutely http://blogs.bmj.com/spcare/2016/08/04/knowledge-translation-impact-at-the-end-of-life/ I wrote this about my area #hpm #eolc #pallonc #WeDocs |
|
@eczemasupport
07 September 2016 20:20
|
|
#WeDocs Involving patients can mean less participant burden in terms of measures and getting to testing venue #WeDocs |
|
@everything_teal
07 September 2016 20:20
|
|
@WeDocs #WeDocs 26% will be diagnosed with #OvarianCancer in A&E. help this to change, through GP training https://t.co/iDvzsCjt2G |
|
@SDenegri
07 September 2016 20:21
|
|
Not sure I agree w/analysis. Many researchers interested but most funders don't ask 4 it. Is changing tho. #wedocs https://twitter.com/WeDocs/status/773601318812454912 |
|
@Mummydoc1
07 September 2016 20:21
|
|
RT @everything_teal: #wedocs To aid early diagnosis of #OvarianCancer here are 10 top tips from @TargetOvarian that #GPs should know https:… |
|
@WeDocs
07 September 2016 20:21
|
|
Remember the hashtag #WeDocs https://t.co/85WZaTGHAi |
|
@WeDocs
07 September 2016 20:21
|
|
@bill_russell3 @SDenegri seriously! Seems hard believe (but we do obviously) have changes occurred fast enough in practice though? #wedocs |
|
@mancunianmedic
07 September 2016 20:22
|
|
#wedocs @rcplondon The need to “carer proof” healthcare decisions http://www.bmj.com/content/352/bmj.i1651 |
|
@eczemasupport
07 September 2016 20:22
|
|
@WeDocs that is twisting my words Researchers need confidence to involve patients #WeDocs |
|
@drol007
07 September 2016 20:22
|
|
@SDenegri @RCPLondon clinician time & confidence vital too #WeDocs - research teams are always going to be stymied unless buy in to promote |
|
@ej136709
07 September 2016 20:22
|
|
Ideas for how #NHS #hospitals can support involvement in research by @SDenegri http://futurehospital.rcpjournal.org/content/3/2/139.full.pdf #WeDocs https://twitter.com/sdenegri/status/773601292849704960 |
|
@RCPhysicians
07 September 2016 20:22
|
|
RT @mancunianmedic: @RCPLondon #wedocs 5. In ensuring the language used is understanable, acessibble, patient centred 6. In communication o… |
|
@CervicalScreen1
07 September 2016 20:22
|
|
RT @everything_teal: #wedocs To aid early diagnosis of #OvarianCancer here are 10 top tips from @TargetOvarian that #GPs should know https:… |
|
@researchospice
07 September 2016 20:22
|
|
RT @drol007: @SDenegri @RCPLondon absolutely http://blogs.bmj.com/spcare/2016/08/04/knowledge-translation-impact-at-the-end-of-life/ I wrote this about my area #hpm #eolc #pallonc #WeDocs |
|
@RCPhysicians
07 September 2016 20:22
|
|
RT @eczemasupport: #WeDocs Involving patients can mean less participant burden in terms of measures and getting to testing venue #WeDocs |
|
@allyc375
07 September 2016 20:22
|
|
RT @SDenegri: IMO essential 4 hospital leadership 2 buy into it - patient voice needs to be heard at Board level #wedocs https://t.co/WNgW… |
|
@RCPhysicians
07 September 2016 20:23
|
|
RT @WeDocs: Remember the hashtag #WeDocs https://t.co/85WZaTGHAi |
|
@WeDocs
07 September 2016 20:23
|
|
@everything_teal yes raising awareness essential #WeDocs but how many women get involved #ppi |
|
@drol007
07 September 2016 20:23
|
|
RT @ellacjackson: Ideas for how #NHS #hospitals can support involvement in research by @SDenegri http://futurehospital.rcpjournal.org/content/3/2/139.full.pdf #WeDocs https://t.… |
|
@WeDocs
07 September 2016 20:23
|
|
RT @ellacjackson: Ideas for how #NHS #hospitals can support involvement in research by @SDenegri http://futurehospital.rcpjournal.org/content/3/2/139.full.pdf #WeDocs https://t.… |
|
@SDenegri
07 September 2016 20:23
|
|
Nice analysis david - I agree. We know how to do this - challenge is getting it embedded in practice #wedocs https://twitter.com/mancunianmedic/status/773601685667209217 |
|
@RCPhysicians
07 September 2016 20:23
|
|
RT @ellacjackson: Ideas for how #NHS #hospitals can support involvement in research by @SDenegri http://futurehospital.rcpjournal.org/content/3/2/139.full.pdf #WeDocs https://t.… |
|
@WeDocs
07 September 2016 20:23
|
|
Important point from @mancunianmedic (need to include #WeDocs hashtag for full marks though!) ?? https://twitter.com/mancunianmedic/status/773602023715602433 |
|
@eczemasupport
07 September 2016 20:23
|
|
RT @ellacjackson: Ideas for how #NHS #hospitals can support involvement in research by @SDenegri http://futurehospital.rcpjournal.org/content/3/2/139.full.pdf #WeDocs https://t.… |
|
@RCPhysicians
07 September 2016 20:23
|
|
RT @drol007: @SDenegri @RCPLondon clinician time & confidence vital too #WeDocs - research teams are always going to be stymied unless buy… |
|
@SDenegri
07 September 2016 20:23
|
|
RT @ellacjackson: Ideas for how #NHS #hospitals can support involvement in research by @SDenegri https://t.co/eydjytX8RT #WeDocs https://t.… |
|
@RCPhysicians
07 September 2016 20:24
|
|
RT @mancunianmedic: #wedocs @rcplondon The need to “carer proof” healthcare decisions https://t.co/1rdXicNb3M |
|
@WeDocs
07 September 2016 20:24
|
|
People are Messy great resource #WeDocs #FutureHospital https://t.co/rEpBNNJ07L |
|
@WeDocs
07 September 2016 20:24
|
|
@SDenegri yes but is this quick enough? Any examples of best practice? #WeDocs |
|
@RCPhysicians
07 September 2016 20:24
|
|
How can the #NHS encourage & develop partnerships between patients & docs in research? #wedocs #futurehospital |
|
@RCPhysicians
07 September 2016 20:24
|
|
JB Important to champion, being pro-ative and promoting the culture and opportunity of research to raise awareness #wedocs |
|
@mancunianmedic
07 September 2016 20:24
|
|
#wedocs @wedocs @RCPLondon this from @NHSBenchmarking superb example of developing measures that matter to patients http://www.nhsbenchmarking.nhs.uk/CubeCore/.uploads/NAIC/Reports/NAICReport2015FINALA4printableversion.pdf |
|
@RCPhysicians
07 September 2016 20:24
|
|
RT @SDenegri: Nice analysis david - I agree. We know how to do this - challenge is getting it embedded in practice #wedocs https://t.co/JL… |
|
@KC_facilitation
07 September 2016 20:24
|
|
Hi #wedocs, am here with @sally_crowe, sorry we're late. Just catching up on your chat! |
|
@bill_russell3
07 September 2016 20:25
|
|
RT @SDenegri: Nice analysis david - I agree. We know how to do this - challenge is getting it embedded in practice #wedocs https://t.co/JL… |
|
@WeDocs
07 September 2016 20:25
|
|
@eczemasupport sorry not intention.. Please tell us ore - keen to understand #WeDocs |
|
@WeDocs
07 September 2016 20:25
|
|
Question 3 #WeDocs #FutureHospital https://twitter.com/rcplondon/status/773602802862002176 |
|
@WeDocs
07 September 2016 20:25
|
|
RT @RCPLondon: JB Important to champion, being pro-ative and promoting the culture and opportunity of research to raise awareness #wedocs |
|
@drol007
07 September 2016 20:25
|
|
RT @WeDocs: People are Messy great resource #WeDocs #FutureHospital http://theatreofdebate.co.uk/People/People-are-Messy.html |
|
@researchospice
07 September 2016 20:25
|
|
Don't forget other clinicians as researchers! #wedocs https://twitter.com/rcplondon/status/773602802862002176 |
|
@WeDocs
07 September 2016 20:25
|
|
RT @mancunianmedic: #wedocs @wedocs @RCPLondon this from @NHSBenchmarking superb example of developing measures that matter to patients htt… |
|
@SDenegri
07 September 2016 20:26
|
|
@WeDocs @mancunianmedic must be able 2 signpost ppl - Join Dementia Research @beatdementia + the trials gateway crucial #wedocs |
|
@WeDocs
07 September 2016 20:26
|
|
@eczemasupport oops 'please tell us more'. - sorry predictive text #wedocs |
|
@LindsayTurnerPM
07 September 2016 20:26
|
|
RT @WeDocs: Question 3 #WeDocs #FutureHospital https://twitter.com/rcplondon/status/773602802862002176 |
|
@RCPhysicians
07 September 2016 20:26
|
|
@Katherine_JLA @sally_crowe Welcome! #wedocs |
|
@WeDocs
07 September 2016 20:26
|
|
@Katherine_JLA @sally_crowe welcome - where do you stand on patients involvement in research? #WeDocs |
|
@drol007
07 September 2016 20:26
|
|
@WeDocs @SDenegri problem is while you want patient input there's always reviewer 3 and the board to get past too #WeDocs |
|
@RCPhysicians
07 September 2016 20:26
|
|
RT @mancunianmedic: #wedocs @wedocs @RCPLondon this from @NHSBenchmarking superb example of developing measures that matter to patients htt… |
|
@WeDocs
07 September 2016 20:26
|
|
RT @researchospice: Don't forget other clinicians as researchers! #wedocs https://twitter.com/rcplondon/status/773602802862002176 |
|
@eczemasupport
07 September 2016 20:26
|
|
@RCPLondon #NHS can encourage and develop PI with support and capacity building of PI platforms #WeDocs |
|
@bill_russell3
07 September 2016 20:27
|
|
#wedocs Language of research process & science is hard for many despite GCSEs for all LOL Eg difference between research & audit |
|
@SDenegri
07 September 2016 20:27
|
|
create a space where that can happen. Hold a meeting. Get patients to tell you what Qs matter to them 1/2 #wedocs https://twitter.com/WeDocs/status/773603069691060228 |
|
@eczemasupport
07 September 2016 20:27
|
|
RT @researchospice: Don't forget other clinicians as researchers! #wedocs https://twitter.com/rcplondon/status/773602802862002176 |
|
@mancunianmedic
07 September 2016 20:27
|
|
@RCPLondon #wedocs if we are talking about research funded by NIHR/councils/charities most of them are pretty clear on requirements, no? |
|
@organiclemon
07 September 2016 20:27
|
|
Can be done! In MH we have good standards now. Language isn't barrier to involvement its inclusion #wedocs https://twitter.com/sdenegri/status/773602584271679488 |
|
@researchospice
07 September 2016 20:27
|
|
@RCPLondon #WeDocs we r exploring impt of helping hospices to be research ready as well as active-so that passion & competence work together |
|
@eczemasupport
07 September 2016 20:27
|
|
RT @bill_russell3: #wedocs Language of research process & science is hard for many despite GCSEs for all LOL Eg difference between resear… |
|
@WeDocs
07 September 2016 20:27
|
|
RT @drol007: @WeDocs @SDenegri problem is while you want patient input there's always reviewer 3 and the board to get past too #WeDocs |
|
@RCPhysicians
07 September 2016 20:27
|
|
RT @eczemasupport: @RCPLondon #NHS can encourage and develop PI with support and capacity building of PI platforms #WeDocs |
|
@SandraARegan
07 September 2016 20:27
|
|
@drol007 @SDenegri @RCPLondon #WeDocs @WeDocs time def a challenge for clin-researchers, @OxfordBRC we are working to support e.g. PPI grps |
|
@WeDocs
07 September 2016 20:27
|
|
RT @SDenegri: create a space where that can happen. Hold a meeting. Get patients to tell you what Qs matter to them 1/2 #wedocs https://t.… |
|
@researchospice
07 September 2016 20:28
|
|
RT @drol007: @WeDocs @SDenegri problem is while you want patient input there's always reviewer 3 and the board to get past too #WeDocs |
|
@RCPhysicians
07 September 2016 20:28
|
|
RT @SDenegri: create a space where that can happen. Hold a meeting. Get patients to tell you what Qs matter to them 1/2 #wedocs https://t.… |
|
@SDenegri
07 September 2016 20:28
|
|
2/2 U can overthink this. Start by having the conversation. Not by thinking of it as a research project. #wedocs https://twitter.com/WeDocs/status/773603069691060228 |
|
@researchospice
07 September 2016 20:28
|
|
RT @SDenegri: create a space where that can happen. Hold a meeting. Get patients to tell you what Qs matter to them 1/2 #wedocs https://t.… |
|
@LindsayTurnerPM
07 September 2016 20:28
|
|
RT @SDenegri: create a space where that can happen. Hold a meeting. Get patients to tell you what Qs matter to them 1/2 #wedocs https://t.… |
|
@KC_facilitation
07 September 2016 20:28
|
|
#WeDocs patient involvement is a fundamental element of @LindAlliance research priority setting process. Equal partners w clinicians |
|
@RCPhysicians
07 September 2016 20:28
|
|
@researchospice #WeDocs do you have experience of this kind of partnership that you can share? |
|
@PhotoPhoto2016
07 September 2016 20:28
|
|
RT @everything_teal: #wedocs To aid early diagnosis of #OvarianCancer here are 10 top tips from @TargetOvarian that #GPs should know https:… |
|
@researchospice
07 September 2016 20:28
|
|
RT @SandraARegan: @drol007 @SDenegri @RCPLondon #WeDocs @WeDocs time def a challenge for clin-researchers, @OxfordBRC we are working to sup… |
|
@eczemasupport
07 September 2016 20:29
|
|
RT @organiclemon: Can be done! In MH we have good standards now. Language isn't barrier to involvement its inclusion #wedocs https://t.co/u… |
|
@researchospice
07 September 2016 20:29
|
|
RT @Katherine_JLA: #WeDocs patient involvement is a fundamental element of @LindAlliance research priority setting process. Equal partners… |
|
@ej136709
07 September 2016 20:29
|
|
RT @Katherine_JLA: #WeDocs patient involvement is a fundamental element of @LindAlliance research priority setting process. Equal partners… |
|
@RCPhysicians
07 September 2016 20:29
|
|
RT @Katherine_JLA: #WeDocs patient involvement is a fundamental element of @LindAlliance research priority setting process. Equal partners… |
|
@SDenegri
07 September 2016 20:29
|
|
That's fantastic. Have seen some gr8 ppi done in the hospice world. I believe you can do ppi in all fields. #wedocs https://twitter.com/researchospice/status/773603652904841216 |
|
@WeDocs
07 September 2016 20:29
|
|
@organiclemon @SDenegri Mental Health definitely led the way in #coproduction #ppi #WeDocs Explain why & how ? |
|
@bill_russell3
07 September 2016 20:29
|
|
#wedocs problem with research it is about not knowing the result and negative results Patients always want something that works & benefits |
|
@WeDocs
07 September 2016 20:30
|
|
RT @SDenegri: 2/2 U can overthink this. Start by having the conversation. Not by thinking of it as a research project. #wedocs https://t.co… |
|
@RCPhysicians
07 September 2016 20:30
|
|
RT @researchospice: @RCPLondon #WeDocs we r exploring impt of helping hospices to be research ready as well as active-so that passion & com… |
|
@WeDocs
07 September 2016 20:30
|
|
RT @Katherine_JLA: #WeDocs patient involvement is a fundamental element of @LindAlliance research priority setting process. Equal partners… |
|
@RCPhysicians
07 September 2016 20:30
|
|
RT @SandraARegan: @drol007 @SDenegri @RCPLondon #WeDocs @WeDocs time def a challenge for clin-researchers, @OxfordBRC we are working to sup… |
|
@mancunianmedic
07 September 2016 20:30
|
|
@SDenegri Simon's tips are all incredibly useful and i am guessing he has some personal experience to bring to bear here #wedocs |
|
@SDenegri
07 September 2016 20:30
|
|
@mancunianmedic @RCPLondon NIHR yes, some charities, yes, But not all. other govt funders, Unies and industry also some way behind #wedocs |
|
@RCPhysicians
07 September 2016 20:31
|
|
Is there more that hospitals can to do improve promotion of research opportunities to #patients? #wedocs #futurehospital |
|
@eczemasupport
07 September 2016 20:31
|
|
@Katherine_JLA @LindAlliance pt and clinicians potentially bring different things to the PSP tho #WeDocs Depends on definition of #equality |
|
@KC_facilitation
07 September 2016 20:31
|
|
.@LindAlliance works w patients&docs to ID research Qs that are important to them,may differ from import to researchers & pharma #wedocs |
|
@researchospice
07 September 2016 20:31
|
|
@RCPLondon #WeDocs ?? recently was reminded that it is not just nurses & docs who are PI's etc..which made me reflect on value of MDT leaders |
|
@WeDocs
07 September 2016 20:31
|
|
@everything_teal @TargetOvarian was that rewarding ? #WeDocs |
|
@SandraARegan
07 September 2016 20:31
|
|
RT @Katherine_JLA: #WeDocs patient involvement is a fundamental element of @LindAlliance research priority setting process. Equal partners… |
|
@bill_russell3
07 September 2016 20:31
|
|
@WeDocs @SDenegri #wedocs my approach was to have a conversations with patients Ethics commt wanted trad survey type activity #different |
|
@ej136709
07 September 2016 20:31
|
|
@mancunianmedic here's the @LindAlliance Top 10 priorities for dementia incl support to stay independent http://www.jla.nihr.ac.uk/priority-setting-partnerships/dementia/top-10-priorities/ #WeDocs |
|
@researchPhil
07 September 2016 20:31
|
|
This strategy developed for patients by patients - any thoughts?http://www.enherts-tr.nhs.uk/files/2016/07/Research-Strategy-2016_Single-Pages-A4-4th-July-2016.pdf #wedocs @researchphil https://t.co/liX7LMrP4h |
|
@everything_teal
07 September 2016 20:31
|
|
#WeDocs patients need to have details of the research and what it means for them in words they understand with time to ask questions |
|
@SDenegri
07 September 2016 20:31
|
|
I don't agree w/this. Pt said to me about a negative result 'it's another thing ticked off' #wedocs https://twitter.com/bill_russell3/status/773604197543673856 |
|
@SandraARegan
07 September 2016 20:32
|
|
RT @researchospice: @RCPLondon #WeDocs we r exploring impt of helping hospices to be research ready as well as active-so that passion & com… |
|
@LindsayTurnerPM
07 September 2016 20:32
|
|
RT @RCPLondon: Is there more that hospitals can to do improve promotion of research opportunities to #patients? #wedocs #futurehospital |
|
@RCPhysicians
07 September 2016 20:32
|
|
RT @researchospice: @RCPLondon #WeDocs ?? recently was reminded that it is not just nurses & docs who are PI's etc..which made me reflect on… |
|
@ej136709
07 September 2016 20:32
|
|
RT @researchospice: @RCPLondon #WeDocs we r exploring impt of helping hospices to be research ready as well as active-so that passion & com… |
|
@mancunianmedic
07 September 2016 20:32
|
|
#wedocs @wedocs @RCPLondon Controversy-Boy here = aren't serially successful research teams good at telling funders what they want to hear? |
|
@k4334b
07 September 2016 20:32
|
|
RT @everything_teal: #wedocs To aid early diagnosis of #OvarianCancer here are 10 top tips from @TargetOvarian that #GPs should know https:… |
|
@AdsNan
07 September 2016 20:32
|
|
RT @everything_teal: #WeDocs patients need to have details of the research and what it means for them in words they understand with time to… |
|
@DrChrisMcAloon
07 September 2016 20:32
|
|
@RCPLondon today challenged by patient to find a research study for them. Empowerment key. #wedocs #FutureHospital #patients |
|
@RCPhysicians
07 September 2016 20:32
|
|
RT @everything_teal: #WeDocs patients need to have details of the research and what it means for them in words they understand with time to… |
|
@drol007
07 September 2016 20:32
|
|
Absolutely but please get the accord guidance sorted so trusts don't worry about costs #WeDocs https://twitter.com/rcplondon/status/773604505778659328 |
|
@RCPhysicians
07 September 2016 20:33
|
|
RT @researchPhil: This strategy developed for patients by patients - any thoughts?https://t.co/yaKKvIS1JT #wedocs @researchphil https://t.c… |
|
@mancunianmedic
07 September 2016 20:33
|
|
#wedocs @RCPLondon @wedocs and so it can become a game of "do we know just the right form of words and current preferred method for Pt Inv?" |
|
@DrChrisMcAloon
07 September 2016 20:33
|
|
@RCPLondon that means going where they are #SoMe #Community #wedocs |
|
@SandraARegan
07 September 2016 20:33
|
|
@drol007 @SDenegri @RCPLondon @WeDocs #WeDocs and also thru offering help to find people to involve https://t.co/3TND2FIg00 |
|
@KC_facilitation
07 September 2016 20:33
|
|
.@ellacjackson @mancunianmedic @LindAlliance this is currently being repeated in Canada so it'll be interesting to see how compares #wedocs |
|
@SDenegri
07 September 2016 20:33
|
|
Wear it on their sleeve. Make it part of mission. Recruit a Patient Research Ambassador @NIHR_PRAI to help #wedocs https://twitter.com/RCPLondon/status/773604505778659328 |
|
@RCPhysicians
07 September 2016 20:33
|
|
RT @DrChrisMcAloon: @RCPLondon today challenged by patient to find a research study for them. Empowerment key. #wedocs #FutureHospital #pat… |
|
@drol007
07 September 2016 20:34
|
|
RT @SandraARegan: @drol007 @SDenegri @RCPLondon @WeDocs #WeDocs and also thru offering help to find people to involve https://t.co/3TND2FI… |
|
@bill_russell3
07 September 2016 20:34
|
|
@SDenegri #wedocs Sorry about generalisation We are all different :-) |
|
@WeDocs
07 September 2016 20:34
|
|
RT @DrChrisMcAloon: @RCPLondon today challenged by patient to find a research study for them. Empowerment key. #wedocs #FutureHospital #pat… |
|
@cea_william
07 September 2016 20:34
|
|
RT @SDenegri: Wear it on their sleeve. Make it part of mission. Recruit a Patient Research Ambassador @NIHR_PRAI to help #wedocs https://t.… |
|
@researchospice
07 September 2016 20:34
|
|
#WeDocs @drol007 absolutely & recently thinking if is a diff btwn hospice, palliative, EOL, supportive research https://twitter.com/sdenegri/status/773604179038396416 |
|
@RCPhysicians
07 September 2016 20:34
|
|
RT @SDenegri: Wear it on their sleeve. Make it part of mission. Recruit a Patient Research Ambassador @NIHR_PRAI to help #wedocs https://t.… |
|
@organiclemon
07 September 2016 20:34
|
|
@WeDocs @SDenegri It was about different needs for diff SUs. Some had good knowledge base others none but everyone encouraged . #wedocs |
|
@mancunianmedic
07 September 2016 20:35
|
|
@bendean1979 @kesleeman @JamillaHussain1 @RCPLondon wow! Dull and sensationalist at the same time? Sounds like Daily Mail! #wedocs |
|
@sally_crowe
07 September 2016 20:35
|
|
#WeDocs my take - patients can have many roles in research depends on how much 'gate keeping' there is and how much is going to be shared! |
|
@SDenegri
07 September 2016 20:35
|
|
Did you point them to UKCTG https://www.ukctg.nihr.ac.uk/ ? @RCPLondon #WeDocs #FutureHospital https://twitter.com/DrChrisMcAloon/status/773604948961550340 |
|
@eczemasupport
07 September 2016 20:35
|
|
RT @researchPhil: This strategy developed for patients by patients - any thoughts?https://t.co/yaKKvIS1JT #wedocs @researchphil https://t.c… |
|
@WeDocs
07 September 2016 20:35
|
|
@mancunianmedic @RCPLondon really? You mean. 'Tick box' rather than true co-production? #WeDocs |
|
@researchospice
07 September 2016 20:35
|
|
@bill_russell3 #WeDocs in some EOL research it is also about understanding the exp of dying not just drugs & interventions ?? |
|
@researchospice
07 September 2016 20:35
|
|
RT @RCPLondon: Is there more that hospitals can to do improve promotion of research opportunities to #patients? #wedocs #futurehospital |
|
@WeDocs
07 September 2016 20:35
|
|
RT @SDenegri: Did you point them to UKCTG https://www.ukctg.nihr.ac.uk/ ? @RCPLondon #WeDocs #FutureHospital https://twitter.com/DrChrisMcAloon/status/773604948961550340 |
|
@eczemasupport
07 September 2016 20:36
|
|
RT @sally_crowe: #WeDocs my take - patients can have many roles in research depends on how much 'gate keeping' there is and how much is go… |
|
@pbtslimited
07 September 2016 20:36
|
|
RT @everything_teal: #WeDocs patients need to have details of the research and what it means for them in words they understand with time to… |
|
@organiclemon
07 September 2016 20:36
|
|
@WeDocs @SDenegri then then a 'menu' of involvement developed with skulls needed and training courses set up. Payments. ( Simon!!!) #wedocs |
|
@NicolaDenegri
07 September 2016 20:36
|
|
RT @SDenegri: Wear it on their sleeve. Make it part of mission. Recruit a Patient Research Ambassador @NIHR_PRAI to help #wedocs https://t.… |
|
@mancunianmedic
07 September 2016 20:36
|
|
@WeDocs @RCPLondon securing research funding is increasingly a job for crack professionals who know just how to phrase bids #wedocs |
|
@eczemasupport
07 September 2016 20:36
|
|
@sally_crowe totally agree Sally - pts have many roles/hats #WeDocs |
|
@SDenegri
07 September 2016 20:36
|
|
@researchospice @bill_russell3 perennial issue is research focusing on treatment not on quality of life issues #wedocs |
|
@RCPhysicians
07 September 2016 20:37
|
|
@everything_teal #wedocs Is it the role of NHS doctors to provide this do you think or other orgs? |
|
@drol007
07 September 2016 20:37
|
|
@WeDocs @mancunianmedic @RCPLondon I'd sincerely doubt a decision for funding rests and falls on the PPI bit #wedocs |
|
@KC_facilitation
07 September 2016 20:37
|
|
Agree @eczemasupport:JLA principle is no hierarchy bet lived experience&prof expertise,BUT can be hard to convince/maintain in prac #WeDocs |
|
@50106019HIST
07 September 2016 20:37
|
|
RT @mancunianmedic: #wedocs @wedocs @RCPLondon Controversy-Boy here = aren't serially successful research teams good at telling funders wha… |
|
@WeDocs
07 September 2016 20:37
|
|
@everything_teal @TargetOvarian so sorry had such hard time & know your insight painfully gained. Thank you for using to help others #wedocs |
|
@mancunianmedic
07 September 2016 20:37
|
|
RT @SDenegri: Did you point them to UKCTG https://www.ukctg.nihr.ac.uk/ ? @RCPLondon #WeDocs #FutureHospital https://twitter.com/DrChrisMcAloon/status/773604948961550340 |
|
@researchospice
07 September 2016 20:37
|
|
@SDenegri @bill_russell3 #WeDocs 140 char diff 2 provide clarity? I agree tho that negative results impt to do to understand what not to do |
|
@bill_russell3
07 September 2016 20:37
|
|
@researchospice #wedocs Is that research? Depends on what is happening i guess |
|
@WeDocs
07 September 2016 20:38
|
|
@organiclemon @SDenegri thanks for explanation #WeDocs |
|
@researchospice
07 September 2016 20:38
|
|
@mancunianmedic @WeDocs @RCPLondon #WeDocs yes & certainly there is skill in wording, application and fitting the research brief |
|
@drol007
07 September 2016 20:38
|
|
Track record innit #WeDocs https://twitter.com/mancunianmedic/status/773605925638774784 |
|
@WeDocs
07 September 2016 20:38
|
|
@organiclemon @SDenegri this is brilliant & shows it can be done! ?? #WeDocs |
|
@WeDocs
07 September 2016 20:38
|
|
RT @SandraARegan: @drol007 @SDenegri @RCPLondon @WeDocs #WeDocs and also thru offering help to find people to involve https://t.co/3TND2FI… |
|
@mancunianmedic
07 September 2016 20:38
|
|
@vlcurrie @WeDocs @RCPLondon research contracts are awarded to teams who are most likely to deliver on time and in budget #wedocs |
|
@organiclemon
07 September 2016 20:38
|
|
@WeDocs @SDenegri next Feb I got full funding to go to big conference and co present double blind RCT findings with professor #wedocs |
|
@researchospice
07 September 2016 20:38
|
|
RT @SDenegri: Wear it on their sleeve. Make it part of mission. Recruit a Patient Research Ambassador @NIHR_PRAI to help #wedocs https://t.… |
|
@KC_facilitation
07 September 2016 20:39
|
|
#wedocs @bendean1979 I hear you!should be room for different approaches&priorities. One is not better than another https://twitter.com/bendean1979/status/773604822767529984 |
|
@drol007
07 September 2016 20:39
|
|
@mancunianmedic @WeDocs @RCPLondon it's also essentially a full time job #WeDocs |
|
@SandraARegan
07 September 2016 20:39
|
|
RT @sally_crowe: #WeDocs my take - patients can have many roles in research depends on how much 'gate keeping' there is and how much is go… |
|
@researchospice
07 September 2016 20:39
|
|
RT @SDenegri: @researchospice @bill_russell3 perennial issue is research focusing on treatment not on quality of life issues #wedocs |
|
@SDenegri
07 September 2016 20:39
|
|
I have #WeDocs @RCPLondon #FutureHospital and so it should have https://twitter.com/drol007/status/773606057876852736 |
|
@RCPhysicians
07 September 2016 20:40
|
|
Are there #patients joining us who can share their experiences of barriers to getting involved in research? #wedocs #futurehospital |
|
@WeDocs
07 September 2016 20:40
|
|
Are we ready for question 4 @RCPLondon? #WeDocs |
|
@ej136709
07 September 2016 20:40
|
|
Quote from our blog from @OxfordBRC Dr Sophie Petit-Zeman: PSP has 'changed how I practice medicine' http://tinyurl.com/he4ovju #WeDocs |
|
@WeDocs
07 September 2016 20:40
|
|
Interesting & thank you @DeborahSaltman for sharing #wedocs https://twitter.com/deborahsaltman/status/773605746038738944 |
|
@bill_russell3
07 September 2016 20:40
|
|
@SDenegri @researchospice #wedocs Yep It is about research into 'care' not ' illness' or 'treatment'. |
|
@everything_teal
07 September 2016 20:40
|
|
RT @RCPLondon: @everything_teal #wedocs Is it the role of NHS doctors to provide this do you think or other orgs? |
|
@mancunianmedic
07 September 2016 20:40
|
|
@bendean1979 @JamillaHussain1 @kesleeman @RCPLondon Quality Improvement and implementation science and qual research allow this #wedocs |
|
@drol007
07 September 2016 20:40
|
|
@mancunianmedic @WeDocs @RCPLondon absolutely not saying it's right just that now it's a business alongside #WeDocs |
|
@WeDocs
07 September 2016 20:41
|
|
Question 4 #WeDocs #FutureHospital https://twitter.com/rcplondon/status/773606783709569024 |
|
@SDenegri
07 September 2016 20:41
|
|
@mancunianmedic @vlcurrie @WeDocs @RCPLondon +patients can help -Gr8 work at @NIHRCRN showing +ve impact of ppi on efficiency #WeDocs |
|
@bill_russell3
07 September 2016 20:41
|
|
@researchospice @SDenegri #wedocs Negative results essential & must be published #badPharma |
|
@drol007
07 September 2016 20:41
|
|
@SDenegri @RCPLondon @WeDocs @mancunianmedic can you be indiscreet or at least the lesson #WeDocs - that's a good thing |
|
@mancunianmedic
07 September 2016 20:41
|
|
@WeDocs @RCPLondon we're ready! #wedocs |
|
@KC_facilitation
07 September 2016 20:42
|
|
RT @WeDocs: Question 4 #WeDocs #FutureHospital https://twitter.com/rcplondon/status/773606783709569024 |
|
@RCPhysicians
07 September 2016 20:42
|
|
How should hospitals support staff to do research and recognise research success? #wedocs #futurehospital |
|
@sally_crowe
07 September 2016 20:42
|
|
@eczemasupport we don't do enough to ask what areas they (patients) are interested in and skills they want to share/contribute #WeDocs |
|
@everything_teal
07 September 2016 20:42
|
|
@RCPLondon #WeDocs I think you should work in partnership working with charities especially on cancers so much of the questions have answers |
|
@RCPhysicians
07 September 2016 20:42
|
|
@drol007 @mancunianmedic @WeDocs JB protected time for research is important, many do research in addition, as you say takes time #wedocs |
|
@LindsayTurnerPM
07 September 2016 20:42
|
|
RT @bill_russell3: @researchospice @SDenegri #wedocs Negative results essential & must be published #badPharma |
|
@WeDocs
07 September 2016 20:43
|
|
@mancunianmedic @drol007 @RCPLondon any advantages to this? We can't think of any - surely well rounded experience vital? #WeDocs |
|
@eczemasupport
07 September 2016 20:43
|
|
@RCPLondon pt barriers to research : knowledge, confidence, opportunity, support, costs #WeDocs |
|
@researchospice
07 September 2016 20:43
|
|
@bill_russell3 @SDenegri #WeDocs all are possibilities perhaps? |
|
@WeDocs
07 September 2016 20:43
|
|
RT @SDenegri: I have #WeDocs @RCPLondon #FutureHospital and so it should have https://t.co/44j1JfBVOY |
|
@researchPhil
07 September 2016 20:43
|
|
Today a great meeting with 20 members of the public: we listened, we can act, we can make a difference #wedocs https://t.co/SMhT47FT0w |
|
@SDenegri
07 September 2016 20:43
|
|
@drol007 @RCPLondon @WeDocs @mancunianmedic where good ppi was fundamental to design - also seen lots of 'go back and think agains' #wedocs |
|
@WeDocs
07 September 2016 20:43
|
|
Question 5 #WeDocs FutureHospital https://twitter.com/rcplondon/status/773607334543253504 |
|
@CElliumK
07 September 2016 20:44
|
|
RT @RCPLondon: Are there #patients joining us who can share their experiences of barriers to getting involved in research? #wedocs #futureh… |
|
@researchospice
07 September 2016 20:44
|
|
@bill_russell3 @SDenegri #WeDocs agreed |
|
@researchospice
07 September 2016 20:44
|
|
RT @RCPLondon: How should hospitals support staff to do research and recognise research success? #wedocs #futurehospital |
|
@KC_facilitation
07 September 2016 20:44
|
|
.@sally_crowe @eczemasupport as opposed to just getting them to proofread the patient information leaflet! #wedocs https://t.co/YvEXs0kGU1 |
|
@RCPhysicians
07 September 2016 20:45
|
|
RT @eczemasupport: @RCPLondon pt barriers to research : knowledge, confidence, opportunity, support, costs #WeDocs |
|
@eczemasupport
07 September 2016 20:45
|
|
RT @researchPhil: Today a great meeting with 20 members of the public: we listened, we can act, we can make a difference #wedocs https://t.… |
|
@KC_facilitation
07 September 2016 20:45
|
|
RT @eczemasupport: @RCPLondon pt barriers to research : knowledge, confidence, opportunity, support, costs #WeDocs |
|
@WeDocs
07 September 2016 20:45
|
|
@sally_crowe @eczemasupport Do patient support groups have a role in engaging patients in research? #WeDocs |
|
@bill_russell3
07 September 2016 20:45
|
|
#WeDocs Reporting of research results needs to be in form that patients can understand. Two reports: 1 ) trad scientific paper 2) informal |
|
@mancunianmedic
07 September 2016 20:45
|
|
@WeDocs @drol007 @RCPLondon we should recognise that quality improvement and implementation science has validity and relevance #wedocs |
|
@eczemasupport
07 September 2016 20:45
|
|
RT @Katherine_JLA: .@sally_crowe @eczemasupport as opposed to just getting them to proofread the patient information leaflet! #wedocs http… |
|
@WeDocs
07 September 2016 20:45
|
|
RT @researchPhil: Today a great meeting with 20 members of the public: we listened, we can act, we can make a difference #wedocs https://t.… |
|
@ej136709
07 September 2016 20:46
|
|
@RCPLondon think about how to involve different groups0: eg guide on involving children&young people https://t.co/FXGyju356J #WeDocs |
|
@mancunianmedic
07 September 2016 20:46
|
|
@WeDocs @drol007 @RCPLondon #wedocs and such approaches dont generally need to go through conventional funding if local innovation |
|
@OCDTrudy
07 September 2016 20:46
|
|
@WeDocs We're a SU research group in MH & encourage others to join in research projects some of which we lead on #WeDocs #futurehospital > |
|
@SDenegri
07 September 2016 20:46
|
|
1st they need 2 know it's impt 4 'quality' + improves outcomes. Then need 2b given time and space to do it. #wedocs https://twitter.com/WeDocs/status/773607770151129088 |
|
@eczemasupport
07 September 2016 20:46
|
|
@Katherine_JLA @sally_crowe hurrah for @CebdNottm and other brill researchers have had joy of working with #WeDocs |
|
@mancunianmedic
07 September 2016 20:46
|
|
@DeborahSaltman @RCPLondon @WeDocs @drol007 you be preaching to the converted Prof - in my case. But.....i must continue in #wedocs room |
|
@researchospice
07 September 2016 20:47
|
|
@RCPLondon @drol007 @mancunianmedic @WeDocs #WeDocs agree with that our findings at @hospiceuk support that |
|
@mancunianmedic
07 September 2016 20:47
|
|
@ellacjackson @RCPLondon good advice #wedocs |
|
@RCPhysicians
07 September 2016 20:47
|
|
RT @OCDTrudy: @WeDocs We're a SU research group in MH & encourage others to join in research projects some of which we lead on #WeDocs #fut… |
|
@RCPhysicians
07 September 2016 20:47
|
|
#wedocs so what are top things the #NHS can do to develop a patient-led research culture? |
|
@OCDTrudy
07 September 2016 20:47
|
|
@WeDocs < SUs don't find it as daunting if another SU explains what participating in research entails #WeDocs #futurehospital |
|
@hormone_doc
07 September 2016 20:48
|
|
@RCPLondon need time, R and D support and less beaurocracy #WeDocs |
|
@KC_facilitation
07 September 2016 20:48
|
|
@WeDocs they're a means of spreading the word abt research&a source of info,knowledge and potential contacts #wedocs https://t.co/ZA993XBCnp |
|
@SDenegri
07 September 2016 20:48
|
|
@bill_russell3 yes, and in diff formats @NIHR_trainees do a gr8 bootcamp for young researchers on dissemination inc. ppi #WeDocs |
|
@WeDocs
07 September 2016 20:48
|
|
Found this on @RCPLondon Patients Active in Research (PAIR) – Resources for Researchers #WeDocs #FutureHospital https://t.co/6IhkgY01Cf |
|
@WeDocs
07 September 2016 20:48
|
|
RT @OCDTrudy: @WeDocs < SUs don't find it as daunting if another SU explains what participating in research entails #WeDocs #futurehospital |
|
@researchospice
07 September 2016 20:48
|
|
& org culture, competency, internal processes, understanding governance etc #WeDocs https://t.co/ZuZdTyTn5Y |
|
@WeDocs
07 September 2016 20:48
|
|
@OCDTrudy love this idea! #WeDocs |
|
@KC_facilitation
07 September 2016 20:48
|
|
RT @eczemasupport: @Katherine_JLA @sally_crowe hurrah for @CebdNottm and other brill researchers have had joy of working with #WeDocs |
|
@mancunianmedic
07 September 2016 20:48
|
|
@bill_russell3 agree++. In fact @rcplondon Future Hospitals Report had version specifically aimed at & co-designed public/patients #wedocs |
|
@RCPhysicians
07 September 2016 20:48
|
|
RT @SDenegri: 1st they need 2 know it's impt 4 'quality' + improves outcomes. Then need 2b given time and space to do it. #wedocs https://t… |
|
@sally_crowe
07 September 2016 20:48
|
|
#WeDocs I wonder if it is about seeing every uncertainty as an opportunity for research? https://twitter.com/rcplondon/status/773604505778659328 |
|
@WeDocs
07 September 2016 20:48
|
|
RT @researchospice: @RCPLondon @drol007 @mancunianmedic @WeDocs #WeDocs agree with that our findings at @hospiceuk support that |
|
@SandraARegan
07 September 2016 20:49
|
|
@WeDocs #wedocs ppl in new PPI gp in early phase cancer trials say energy is challenge - need to know that it's OK to not always take part |
|
@RCPhysicians
07 September 2016 20:49
|
|
RT @hormone_doc: @RCPLondon need time, R and D support and less beaurocracy #WeDocs |
|
@mancunianmedic
07 September 2016 20:49
|
|
RT @researchospice: & org culture, competency, internal processes, understanding governance etc #WeDocs https://twitter.com/eczemasupport/status/773607640773562368 |
|
@mancunianmedic
07 September 2016 20:49
|
|
RT @WeDocs: Found this on @RCPLondon Patients Active in Research (PAIR) – Resources for Researchers #WeDocs #FutureHospital https://t.co… |
|
@drol007
07 September 2016 20:49
|
|
@RCPLondon cut down on the red tape #WeDocs - go paperless obvs & achieve "research excellence captain" - less PPE more PPI at the top |
|
@RCPhysicians
07 September 2016 20:49
|
|
RT @researchospice: & org culture, competency, internal processes, understanding governance etc #WeDocs https://twitter.com/eczemasupport/status/773607640773562368 |
|
@researchospice
07 September 2016 20:49
|
|
@bill_russell3 #WeDocs agree & change patients to all as everyone would benefit from a plain English version as well as full report |
|
@RCPhysicians
07 September 2016 20:49
|
|
RT @WeDocs: Found this on @RCPLondon Patients Active in Research (PAIR) – Resources for Researchers #WeDocs #FutureHospital https://t.co… |
|
@researchospice
07 September 2016 20:50
|
|
@mancunianmedic @WeDocs @drol007 @RCPLondon #WeDocs strongly agree with this |
|
@SMGreenArts
07 September 2016 20:50
|
|
RT @everything_teal: #WeDocs patients need to have details of the research and what it means for them in words they understand with time to… |
|
@sally_crowe
07 September 2016 20:50
|
|
#WeDocs also the more shared decision making there is the more this highlights evidence gaps that need filling? https://twitter.com/rcplondon/status/773604505778659328 |
|
@OCDTrudy
07 September 2016 20:50
|
|
@WeDocs Our projects often use #EBCD, means we can involve large numbers of SUs. We work in collaboration with staff no us and them #WeDocs |
|
@eczemasupport
07 September 2016 20:50
|
|
RT @SandraARegan: @WeDocs #wedocs ppl in new PPI gp in early phase cancer trials say energy is challenge - need to know that it's OK to not… |
|
@KC_facilitation
07 September 2016 20:50
|
|
There are some amazing researchers out there doing brilliant involvement work,a huge amount of good practice to share @eczemasupport #wedocs |
|
@researchPhil
07 September 2016 20:50
|
|
We are building 'research activity' into staff appraisal to improve 'research culture' #wedocs @ENHertResearch https://twitter.com/SDenegri/status/773608493421035526 |
|
@WeDocs
07 September 2016 20:50
|
|
Patient choice is paramount #WeDocs https://twitter.com/sandraaregan/status/773609037053255680 |
|
@researchospice
07 September 2016 20:50
|
|
RT @WeDocs: Found this on @RCPLondon Patients Active in Research (PAIR) – Resources for Researchers #WeDocs #FutureHospital https://t.co… |
|
@everything_teal
07 September 2016 20:50
|
|
#WeDocs the ovarian charities have patient who voices/ research advocates who willing to share experiences or give feedback on proposals |
|
@sally_crowe
07 September 2016 20:51
|
|
Well that has made my day! #WeDocs https://twitter.com/drchrismcaloon/status/773604948961550340 |
|
@KC_facilitation
07 September 2016 20:51
|
|
Also important to acknowledge and share the PPI horror stories and lessons learned! @eczemasupport #wedocs |
|
@SandraARegan
07 September 2016 20:51
|
|
@WeDocs @RCPLondon #WeDocs @OxfordBRC PPI support for researchers incs @LindAlliance PSPs, lay input to lay summs, indiv talks about PPI |
|
@RCPhysicians
07 September 2016 20:51
|
|
RT @researchPhil: We are building 'research activity' into staff appraisal to improve 'research culture' #wedocs @ENHertResearch https://t.… |
|
@mancunianmedic
07 September 2016 20:52
|
|
@OCDTrudy @WeDocs now you wouldnt be using inaccessible jargon there would you? #wedocs. Whats "EBCD"? pray tell? |
|
@AlresfordBear
07 September 2016 20:52
|
|
@WeDocs Unless a thresholds appears and variations in geographical access and inequality through risk. #WeDocs |
|
@k4334b
07 September 2016 20:52
|
|
RT @WeDocs: Question 5 #WeDocs FutureHospital https://twitter.com/rcplondon/status/773607334543253504 |
|
@researchospice
07 September 2016 20:52
|
|
@researchPhil @ENHertResearch @SDenegri #WeDocs excellent- u might be interested in the research activity framework that we are developing |
|
@SDenegri
07 September 2016 20:52
|
|
@RCPLondon collectively/individlly NHS orgs need 2 prioritise research + est relationship w/patients @OfficialNIHR + others can help #wedocs |
|
@AlresfordBear
07 September 2016 20:52
|
|
@WeDocs Apologies for grammar #WeDocs |
|
@mancunianmedic
07 September 2016 20:53
|
|
#wedocs even "PPI" shows dangers of jargon "Payment Protection Insurance" "Proton Pump Inhibitor" "Patient &Public Involvement" @RCPLondon |
|
@storminaddcup2
07 September 2016 20:53
|
|
RT @researchPhil: We are building 'research activity' into staff appraisal to improve 'research culture' #wedocs @ENHertResearch https://t.… |
|
@sally_crowe
07 September 2016 20:53
|
|
@eczemasupport @Katherine_JLA @CebdNottm indeed they are a very fine bunch of people! #WeDocs |
|
@WeDocs
07 September 2016 20:53
|
|
Fascinating chat tonight - we have 8 minutes left - where did that hour go @RCPLondon #WeDocs |
|
@WeDocs
07 September 2016 20:53
|
|
@mancunianmedic @WePatients great time to consider starting one! #WeDocs |
|
@RCPhysicians
07 September 2016 20:53
|
|
RT @mancunianmedic: #wedocs even "PPI" shows dangers of jargon "Payment Protection Insurance" "Proton Pump Inhibitor" "Patient &Public Invo… |
|
@PKDCharity
07 September 2016 20:54
|
|
RT @researchPhil: We are building 'research activity' into staff appraisal to improve 'research culture' #wedocs @ENHertResearch https://t.… |
|
@RCPhysicians
07 September 2016 20:54
|
|
Great debate everyone - we are certainly taking a lot away from this #wedocs |
|
@SDenegri
07 September 2016 20:54
|
|
Sounds gr8 - exactly right approach. Make it part of day job but keep it simple/provide support. #wedocs @RCPLondon https://twitter.com/researchPhil/status/773609486783287296 |
|
@mancunianmedic
07 September 2016 20:54
|
|
@WeDocs @WePatients so long as they still dress like Man City players i am supportive #wedocs |
|
@OCDTrudy
07 September 2016 20:54
|
|
RT @mancunianmedic: @OCDTrudy @WeDocs now you wouldnt be using inaccessible jargon there would you? #wedocs. Whats "EBCD"? pray tell? |
|
@Elektra
07 September 2016 20:55
|
|
RT @researchPhil: We are building 'research activity' into staff appraisal to improve 'research culture' #wedocs @ENHertResearch https://t.… |
|
@researchPhil
07 September 2016 20:55
|
|
We see research as a way to improve patient experience & outcome - clinical & financial (& moral) benefit #wedocs https://twitter.com/SDenegri/status/773609969560219648 |
|
@ej136709
07 September 2016 20:55
|
|
For all researchers inspired this eve these resources from INVOLVE can help you #WeDocs http://bit.ly/2c8Y4Qb |
|
@SDenegri
07 September 2016 20:55
|
|
@mancunianmedic @RCPLondon yes v true. The barbed wire of ppi! I say - be clear about purpose, the rest often follows #plainenglish #wedocs |
|
@sally_crowe
07 September 2016 20:56
|
|
#WeDocs can we have some special 'research excellence captain" jaunty caps please? https://twitter.com/drol007/status/773609151171817472 |
|
@RCPhysicians
07 September 2016 20:56
|
|
#wedocs thank you everyone for taking part. look out for the blog report |
|
@WeDocs
07 September 2016 20:56
|
|
Remember #WeDocs https://twitter.com/ocdtrudy/status/773610401242185728 |
|
@drol007
07 September 2016 20:56
|
|
@sally_crowe @RCPLondon aye aye #WeDocs steer a course full steam ahead |
|
@RCPhysicians
07 September 2016 20:56
|
|
RT @ellacjackson: For all researchers inspired this eve these resources from INVOLVE can help you #WeDocs http://bit.ly/2c8Y4Qb |
|
@mancunianmedic
07 September 2016 20:57
|
|
@WeDocs from @rcplondon end (comms will kill me!)I can offer for us to retweet some resources/examples from our work in due course #wedocs |
|
@SDenegri
07 September 2016 20:57
|
|
Really enjoying it - Mary Berry and all bakers eat ur hearts out. Or should I say biscuits, bread, cakes etc #wedocs https://twitter.com/RCPLondon/status/773610421819432960 |
|
@storminaddcup2
07 September 2016 20:57
|
|
RT @bill_russell3: #WeDocs Reporting of research results needs to be in form that patients can understand. Two reports: 1 ) trad scientifi… |
|
@RCPhysicians
07 September 2016 20:57
|
|
RT @researchPhil: We see research as a way to improve patient experience & outcome - clinical & financial (& moral) benefit #wedocs https:/… |
|
@eczemasupport
07 September 2016 20:57
|
|
RT @sally_crowe: #WeDocs can we have some special 'research excellence captain" jaunty caps please? https://twitter.com/drol007/status/773609151171817472 |
|
@NicolaDenegri
07 September 2016 20:57
|
|
RT @SDenegri: Really enjoying it - Mary Berry and all bakers eat ur hearts out. Or should I say biscuits, bread, cakes etc #wedocs https://… |
|
@mancunianmedic
07 September 2016 20:57
|
|
RT @ellacjackson: For all researchers inspired this eve these resources from INVOLVE can help you #WeDocs http://bit.ly/2c8Y4Qb |
|
@OCDTrudy
07 September 2016 20:57
|
|
@WeDocs Sorry *slaps wrist* #WeDocs |
|
@Dr_A_Rashid
07 September 2016 20:57
|
|
From tokenism to empowerment: progressing patient and public involvement in healthcare improvement #wedocs http://qualitysafety.bmj.com/content/early/2016/03/18/bmjqs-2015-004839.abstract |
|
@WeDocs
07 September 2016 20:57
|
|
RT @SDenegri: Really enjoying it - Mary Berry and all bakers eat ur hearts out. Or should I say biscuits, bread, cakes etc #wedocs https://… |
|
@everything_teal
07 September 2016 20:57
|
|
RT @RCPLondon: Are there #patients joining us who can share their experiences of barriers to getting involved in research? #wedocs #futureh… |
|
@WeDocs
07 September 2016 20:58
|
|
@sandyra1961 @SandraARegan how can we avoid this? #WeDocs |
|
@drol007
07 September 2016 20:58
|
|
Then all the mystery of what the cell cultures do in the NMR machine that goes ping is gone ... #WeDocs https://twitter.com/sdenegri/status/773610787923456000 |
|
@SonOfHywel
07 September 2016 20:58
|
|
#WeDocs can read my #blog on #care - https://jonnyhowellsblog.wordpress.com/2016/08/28/the-care-sector-in-casualty/ as there are cross-sector challenges ahead https://t.co/vnEFOdXmiw |
|
@PhilippaCRees
07 September 2016 20:58
|
|
RT @Dr_A_Rashid: From tokenism to empowerment: progressing patient and public involvement in healthcare improvement #wedocs https://t.co/Nc… |
|
@WeDocs
07 September 2016 20:58
|
|
People-focused research in the NHS simply cannot be delivered without the involvement of patients and the public. @CMO_England #WeDocs |
|
@drol007
07 September 2016 20:58
|
|
RT @sally_crowe: #WeDocs can we have some special 'research excellence captain" jaunty caps please? https://twitter.com/drol007/status/773609151171817472 |
|
@RCPhysicians
07 September 2016 20:59
|
|
RT @Dr_A_Rashid: From tokenism to empowerment: progressing patient and public involvement in healthcare improvement #wedocs https://t.co/Nc… |
|
@WeDocs
07 September 2016 20:59
|
|
This is a great quote for CMO #WeDocs https://twitter.com/wedocs/status/773611437587623936 |
|
@drol007
07 September 2016 20:59
|
|
Case in point @WeDocs #WeDocs https://twitter.com/bmj_latest/status/773600001175883777 |
|
@NHSBenchmarking
07 September 2016 20:59
|
|
RT @mancunianmedic: #wedocs @wedocs @RCPLondon this from @NHSBenchmarking superb example of developing measures that matter to patients htt… |
|
@sally_crowe
07 September 2016 20:59
|
|
Super important point Sandra - need to be sensitive to what people can realistically manage.#WeDocs https://twitter.com/sandraaregan/status/773609037053255680 |
|
@LucyCarter6
07 September 2016 20:59
|
|
RT @ellacjackson: For all researchers inspired this eve these resources from INVOLVE can help you #WeDocs http://bit.ly/2c8Y4Qb |
Stats
Total contributers:
44
Total tweets:
357
Total reach:
7,254,277
