#patientvoice
We recently attended the #NationalDigitalRoundtable where Medlive's Maria Arnone shared how crucial the #PatientVoice is in reshaping how emerging therapies are applied in #ClinicalCare.

Thank you to Social Driver & to our incredible partners like the International #FOP Association

bit.ly/4k5jKzg
May 16, 2025 at 5:20 PM Everybody can reply
🙌🏾 Honored to present ‘The Current State of #Data in #Transplantation’🎤 @astinfo.bsky.social #CEoT2025 Session 1 ‘What is the Future of Data to Drive Modernization?’
🙏🏽Grateful to #PatientVoice panelist for setting stage: We must work together to gather data needed by patients, families➕ clinicians 📊
March 3, 2025 at 3:43 AM Everybody can reply
1 reposts 6 likes
Want to learn more about this patient’s journey and insights?
🔗 www.linkedin.com/posts/mpn-jo...

#MPN #MPNJournal #PatientVoice
June 21, 2025 at 9:42 AM Everybody can reply
1 likes
It was refreshing to meet with an anaesthetist yesterday at pre-op clinic who introduced me to the @sobauk.co.uk guidelines. I'd not come across them until now. Thank you for making this difficult time that little bit easier 🙏 #SharedDecisionMaking #PatientVoice #Thankyou
August 1, 2025 at 8:15 AM Everybody can reply
At the East of England SDE, listening to our diverse community is at the heart of what we do. From a recent survey, we gathered key views on using NHS data for research, take a look at the insights.

#SDE #HealthData #PatientVoice #DataPrivacy #EastOfEngland #HealthResearch #Survey #EthnicMinorities
September 3, 2025 at 10:49 AM Everybody can reply
Presenting at the HRB Public Reviewer Event in Dublin today #PPI #PatientVoice #PatientsMatter #BetterResearch #ImprovingOutcomes #EmbeddedPatientResearcher
November 28, 2024 at 9:57 AM Everybody can reply
1 likes
𝗙𝗜𝗚𝗛𝗧𝗜𝗡𝗚 𝗙𝗔𝗧𝗜𝗚𝗨𝗘 𝗪𝗜𝗧𝗛 𝗠𝗣𝗡 𝗝𝗢𝗨𝗥𝗡𝗔𝗟 – A patient’s story 💡🏃‍♂️ Diagnosed with PV in 2020, I tracked symptoms daily & found a direct link between movement & fatigue. Exercise helped reduce symptoms. Personal experience—results may vary.
👉 See next post for more!

#MPN #MPNJournal #HealthData #PatientVoice
June 21, 2025 at 9:42 AM Everybody can reply
2 reposts 2 likes
⭐ Meet Michelle Stevenson – Patient Contributor & Champion for Change!

👍 Michelle brings 37 years of lived experience with #PsoriaticArthritis to our Patient and Public Involvement #PPI Core Group. She’s also a community leader, DJ, baker, and all-round powerhouse.

#PatientVoice #Rheumatology
June 12, 2025 at 10:37 AM Everybody can reply
1 reposts 4 likes
Your input will help the #MarfanTrust shape better services and support for people living with these conditions.

Take part: bit.ly/MarfanTrust
Learn more: picker.org/MarfanTrust
Questions? Email [email protected] or call  0333 011 5256

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#PatientExperience #Survey #PatientVoice
September 11, 2025 at 10:04 AM Everybody can reply
New commentary with Bryce Reeve in JPRO: “Artificial intelligence and the future of patient-centered outcomes.”

GenAI could transform how we capture the patient voice but we must proceed with care.

Link: doi.org/10.1186/s416...

#PROMs #PatientVoice #GenerativeAI #FutureOfHealthcare #DigitalHealth
Artificial intelligence and the future of patient-centered outcomes - Journal of Patient-Reported Outcomes
Background Terheyden et al. recently described a compelling vision for large language model-enabled patient-reported outcome measures (LLM-PROMs). Main text We support Terheyden et al.’s vision and offer complementary observations about the potential for generative artificial intelligence (GenAI) in assessing patient-centered outcomes. GenAI has the potential to improve the quality and efficiency of developing traditional PROMs and collecting patient experience data. Traditional PROMs rely on standardized questions and responses, which may introduce ambiguity about the health concept being assessed. Yet, interviewers who are trained in the meaning of the concepts can tailor questions to the respondent’s experience and conversation style and have a back-and-forth clarification of meaning to ensure that both the interviewer’s and respondent’s meanings are aligned. The shortcoming of this approach is that it cannot be done at scale with human interviewers. However, trained GenAI interviewers could make such an assessment a reality for large samples of patients. The technology is already available to train GenAI interviewers in interview technique, the intent of each item, and a consistent approach toward coding the respondent’s answer based on the conversation. Conclusion The health outcomes research field should actively inquire into what patient experience data can be collected via GenAI and rigorously evaluate the quality of the assessments obtained.
doi.org
September 26, 2025 at 2:43 PM Everybody can reply
Reading Patrick Barkham’s Guardian piece hit close to home. In 2022 I was in a flare. Rheumatology said I’d been discharged without telling me or my GP. Even A&E couldn’t get me seen. Like Milly’s, my story shows the gaps. Been through similar? Share it.
#PatientVoice #DisabilityJustice
As my daughter got sicker and sicker, our quest for answers dragged on. How did we all miss the bacteria taking over her body?
I write about nature, but when Milly got sick with a mystery illness, it never occurred to me that a long-forgotten tick bite could be the cause
www.theguardian.com
October 2, 2025 at 11:24 AM Everybody can reply
Friends of Kristi Jo and her ongoing journey: http://friendsofkristijo.org/
#cancer #donors #patientvoice @VUMChealth
December 3, 2024 at 12:23 PM Everybody can reply
I look forward to supporting patients and the healthcare system to make this a reality for all #patientvoice #10yearhealthplan 2/2
July 3, 2025 at 10:46 AM Everybody can reply
1 likes
🩸 We’re proud to see Roberta Anido de Pena, #IPOPI Board Member, speak at the Health Technology Assessment international (@HTAi) 2025 symposium on the challenges of value recognition and access to plasma-derived medicinal products (PDMPs).

#HTAi2025 #PlasmaTherapies #AccessMatters #PatientVoice
June 12, 2025 at 12:09 PM Everybody can reply
1 reposts 3 likes
The #LADAorg Board was honored to attend the @masonicresearch.bsky.social 1958 Gala to represent the #PatientVoice and support #Lupus, Autoimmune, Cardiovascular, and Autism research. Kudos to Maria Kontaridis and her staff for hosting such an amazing event! @annezab.bsky.social
April 1, 2025 at 4:37 PM Everybody can reply
3 reposts 3 likes
We are excited to attend #ACR25 to network, learn and share our resources. Visit us at the #Lupus Community Booth # 2121. #PatientVoice
@lupuschat.bsky.social @michiganlupus.bsky.social @infusionaccessfoundation.org @acr25.bsky.social @rheumepi.bsky.social @rheumcat.bsky.social

#LADAorg
October 21, 2025 at 2:15 AM Everybody can reply
4 reposts 6 likes
🙌🏾Honored to help wrap #KidneyWk2022 w/ co-moderator🎤@AneeshaShetty2 at final session: 'Challenges when addressing #LivingDonor #Kidney Function'💙💚
•🙏🏾presenters➕attendees for thoughtful discussion of evidence📊& @LacyeTrevino➕ @MadMovesAcademy for powerful #PatientVoice🤲🏽 https://t.co/ubm2MyQ0s1
November 28, 2024 at 7:38 AM Everybody can reply
A truly moving and insightful session at #NIHRHaH2025: "The Bradford Story and Patient Voice" with Dr Mat Mathai, Tam, and her children. Hearing directly from families on their experiences with Hospital at Home. #PatientVoice #NIHR
@nihrarcs.bsky.social @bthft.bsky.social
@arc-gm.bsky.social
June 24, 2025 at 9:44 AM Everybody can reply
2 reposts 5 likes
Want to make sure your patients have their voices heard?

The 2025 kidney PREM survey is now open📝

It takes minutes to complete, is anonymous & contributes to the national picture of kidney care.

📅Closes on 10 Nov: www.kidneycareuk.org...

#KidneyCare #PatientVoice
September 16, 2025 at 3:26 PM Everybody can reply
1 reposts
When planning a #patient conference, it's best to book speakers who can understand and empathize with the #PatientExperience.
IMIDeology gets it.
See this week's #Sarcoidosis News column.
~🦋
lnkd.in/dXxv9-Jb
#autoimmune #arthritis #ChronicIllness #disability #RareDisease #SpoonieSky
#PatientVoice
October 3, 2025 at 3:15 PM Everybody can reply
1 likes
Today is the last day to complete our survey about living with polymyalgia rheumatica (PMR)! This is your chance to share your experience and help shape access to treatment.

Learn more + add your voice: buff.ly/2LUuZry

#PMR #Kevzara #PatientInput #PatientVoice
October 6, 2025 at 1:03 PM Everybody can reply
1 reposts 2 likes
Long COVID Awareness Day, emphasizes the importance of amplifying the patient's voice. Let's join together to raise awareness and support those affected by this condition. #LongCOVID #PatientVoice amplification. buff.ly/3TGs2CC
March 19, 2024 at 12:33 PM Everybody can reply