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patient engagement

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  1. Haveyoutriedyoga
    Thread

    How do Health Service (NHS) organisations respond to patient concerns? A qualitative interview study of PALS, 2021, Shepard et al

    How do Health Service (NHS) organisations respond to patient concerns? A qualitative interview study of the Patient Advice and Liaison Service...
    Thread by: Haveyoutriedyoga, Nov 25, 2021, 4 replies, in forum: Other health news and research
  2. ME/CFS Skeptic
    Thread

    A charter to improve ME/CFS research

    I recently followed an online webinar about patient involvement in the Dutch ME/CFS program. It looks like the idea is to involve patients in as...
    Thread by: ME/CFS Skeptic, Oct 10, 2021, 27 replies, in forum: ME/CFS research news
  3. Sly Saint
    Thread

    BMJ Opinion: To speed progress in treating chronic conditions, engage patients and caregivers as research partners, 2021, Lubell

    Chronic diseases like Ehlers-Danlos Syndrome, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Fibromyalgia have long been...
    Thread by: Sly Saint, Sep 21, 2021, 6 replies, in forum: General ME/CFS news
  4. Simon M
    Thread

    For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects (Simon M blog)

    For faster progress in ME/CFS research, funders and researchers need to treat patients as partners, not subjects [ATTACH] Publicly funded...
    Thread by: Simon M, May 19, 2021, 17 replies, in forum: General ME/CFS news
  5. Milo
    Thread

    M.E. In BC [British Columbia]: How the healthcare system for M.E. impacts clinicians and patients

    M.E. In BC [British Columbia]: How the healthcare system for M.E. impacts clinicians and patients This is a preliminary study assessing the unmet...
    Thread by: Milo, Apr 2, 2021, 1 replies, in forum: ME/CFS research news
  6. Amw66
    Thread

    Engaging with severly affected - surveys etc ( PLP survey coming up)

    Advocacy work can involve surveys - online/ telephone/ hard copy. Much of the time, those who are most severly affected can find it difficult to...
    Thread by: Amw66, Mar 1, 2021, 1 replies, in forum: General Advocacy Discussions
  7. Hutan
    Thread

    Predicting patient engagement in IAPT services: a statistical analysis of electronic health records, 2019, Davis et al

    doi:10.1136/ebmental-2019-300133 Sci-Hub Alice Davis, Theresa Smith, Jenny Talbot, Chris Eldridge, David Betts ABSTRACT Background Across...
    Thread by: Hutan, Nov 8, 2020, 0 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  8. Sly Saint
    Thread

    Therapists’ perceptions of barriers and facilitators to uptake and engagement with therapy in long‐term conditions - Oct 2020 Moss-Morris et al

    Abstract Objective Improving Access to Psychological Therapies (IAPT) services in England have established a long‐term condition (LTC) pathway in...
    Thread by: Sly Saint, Oct 27, 2020, 7 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  9. Andy
    Thread

    Cochrane UK Consumer Champions: another step towards better patient and public involvement

    Anybody want to help spread the Cochrane gospel? Cochrane UK has launched the Cochrane UK Consumer Champions initiative and we are inviting...
    Thread by: Andy, Aug 28, 2020, 5 replies, in forum: Other health news and research
  10. Amw66
    Thread

    Consultation involvement

    From previous threads ( particularly the paediatric NICE guidelines consultation and problems with conversation), there was interesting discussion...
    Thread by: Amw66, Aug 3, 2020, 9 replies, in forum: General Advocacy Discussions
  11. Andy
    Thread

    The experience of living with severe ME/CFS, Newton et al, study starts July 2020

    The plight of patients with severe ME/CFS has been the subject of a series of studies funded by ME Research UK over the last few years, and...
    Thread by: Andy, Jun 5, 2020, 0 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  12. Andy
    Thread

    UK: Workshop: "What big research questions do people with M.E., their carers and clinicians want answered?", 10th March 2020

    What big research questions do people with M.E., their carers and clinicians want answered? You are invited to a free workshop on Tuesday 10...
    Thread by: Andy, Feb 20, 2020, 14 replies, in forum: Advocacy Projects and Campaigns
  13. Andy
    Thread

    Blog: BMJ Opinion: Dear Father Christmas—The BMJ Patient Advisory Panel’s wish list

    Dear Father Christmas, I do apologise for bothering you. I know December is fiendishly busy, and how you manage to conjure such good cheer in it,...
    Thread by: Andy, Dec 20, 2019, 2 replies, in forum: Other health news and research
  14. Andy
    Thread

    Survey: Consultation on the MULTI-ACT Patient Engagement Strategy

    This was highlighted in the December Invest in ME newsletter. Welcome to the MULTI-ACT Patient Engagement Survey MULTI-ACT is a 3-year European...
    Thread by: Andy, Dec 1, 2019, 3 replies, in forum: General disability topics and advocacy
  15. rvallee
    Thread

    #RCPsychIC hosting a panel on patient engagement with Rob Howard, Mental Elf and Simon Wessely

    [MEDIA] Likely followed by a talk on vaccine safety by Andrew Wakefield and a panel on the scientific method sponsored by Goop.com and...
    Thread by: rvallee, Jul 2, 2019, 12 replies, in forum: Psychosomatic research - ME/CFS and Long Covid
  16. Andy
    Thread

    Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

    So, for those of you who aren't aware, I have been fortunate enough to be invited along to take part in these meetings as a patient...
    Thread by: Andy, May 7, 2019, 75 replies, in forum: ME/CFS research news
  17. Andy
    Thread

    What info/stats could be useful in interesting people/organisations into ME research?

    Title pretty much explains it. What information and/or statistics can you suggest that might be useful in interesting people outside of the ME...
    Thread by: Andy, Mar 2, 2019, 5 replies, in forum: General Advocacy Discussions
  18. Andy
    Thread

    What accomodations would PwME need for us to be able to be involved in research?

    Title pretty much says it all, or perhaps another way of asking the question is "What would be the ideal way that researchers could accommodate...
    Thread by: Andy, Mar 2, 2019, 7 replies, in forum: General Advocacy Discussions
  19. Andy
    Thread

    How Can I Convince Doctors I’m an Informed Patient? [uses ME as one example of the issues]

    I have fibromyalgia, a condition that causes chronic pain and fatigue, along with a laundry list of associated conditions. Once, I went to a...
    Thread by: Andy, Feb 27, 2019, 0 replies, in forum: General ME/CFS news
  20. Esther12
    Thread

    2019 blog: Co-producing a systematic review with patients [Patient wanted more positive emphasis on psychosocial management for post cancer fatigue]

    https://blogs.bmj.com/bmj/2019/02/08/hilde-t-myrhaug-and-tone-hansen-co-producing-a-systematic-review-with-patients/ At least I wanted the...
    Thread by: Esther12, Feb 26, 2019, 2 replies, in forum: Other health news and research
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