Screening, recruitment, and follow-up.

We address #patientperspectives and the real-world acceptability of continuous glucose monitoring in #hemodialysis patients with type 2 diabetes. #T2DM #kidneyresearch @umanitoba.bsky.social @csnscn.bsky.social

doi.org/10.1177/2054...

🧵 3/4 This survey is essential: because as #AI and #OpenScience transform research, #patientperspectives must lead the way 🗣️
It will:
• Understand how people with PKD perceive these changes
• Identify what matters most to patients
• Ensure safe, ethical, patient-centred research

Patients’ Perceptions of the Role of Nursing in Substance Use Disorder Treatment Programs: Qualitative Study Background: Substance use disorders are chronic conditions with significant personal and social consequences. Nursing care plays a key role in outpatient and community-based rehabilitation programs, yet patients’ perspectives on this role remain underexplored. Objective: This study aimed to explore how patients with substance use disorders perceive and interpret #nursing care in community addiction treatment centers operated by the Spanish Red Cross in Madrid, Spain. Specifically, it sought to describe the organizational and care-related roles attributed to community addiction treatment centers and analyze patients’ perceptions of #nurses’ technical and relational functions. Methods: A phenomenological qualitative design was used. Fourteen in-depth, semistructured interviews were conducted with patients undergoing treatment at Red Cross centers. Participants were selected through purposive sampling to ensure diversity in age, gender, substance use, and treatment experiences. The data were analyzed using systematic text condensation and supported by the ATLAS.ti software. Results: The center is perceived as a significant space not only for offering healthy leisure activities outside the context of substance use but also as a supportive environment that fosters a sense of belonging to a community. Patients valued the emotional support, empathy, and relational care provided by #nurses, often highlighting their role in building trust and offering personalized attention. However, there was limited awareness of #nurses’ technical competencies. Conclusions: These findings underscore the importance of holistic, patient-centered care and the need to enhance the visibility and recognition of #nursing roles in addiction treatment settings.

New in JMIR Nursing: Patients’ Perceptions of the Role of Nursing in Substance Use Disorder Treatment Programs: Qualitative Study #Nursing #SubstanceUseDisorder #AddictionTreatment #PatientPerspectives #MentalHealth

A quote on a blue textured background reads, "I have to remind myself every day that I have no control over what my body does. I’ve been here before, and I’m positive I’ll be here again. It wasn’t worth the tears this time." Below, there is a circular photo of a person with glasses and a smile. The name "Kristy Coleman" and the title "ITP Contributor" are included.

In her latest patient perspective column, Kristy Coleman opens up about navigating the emotional highs and lows of living with immune thrombocytopenia (#ITP).

Read Kristy's full column 🖊️: https://bit.ly/41n7a6v

#RareDisease #RareVoices #PatientPerspectives #MedSky

A new Open Access mixed systematic review explores patients’ and physiotherapists’ perspectives on group-based rehabilitation interventions.

Full article: www.archives-pmr.org/article/S0003-9993(25)01...

#ArchivesPMR #OpenAccess #Physiotherapy #PatientPerspectives #ACRM

A new Open Access mixed systematic review explores patients’ and physiotherapists’ perspectives on group-based rehabilitation interventions.

Full article: www.archives-pmr.org/article/S0003-9993(25)01...

#ArchivesPMR #OpenAccess #Physiotherapy #PatientPerspectives #ACRM

💬 This #WorldCOPDDay, Mascha van Oers shares her experience of living with COPD, how she manages the condition and the importance of patient involvement in raising awareness and understanding.

🔗 europeanlung.org/en/news-and-...

#COPD #PatientPerspectives #LungHealth

Wonderful #PatientPerspectives poster by @japan_rheu_vas on a low intensity strength training designed for patients with #RheumaticDisease.

Ten simple 2-3 minute videos to prevent osteoporosis and improve mood/QoL!

Center for Innovation & Value Research blueprint aims to embed patient perspectives across healthcare research and decision-making | Becaris Publishing

Center for Innovation & Value Research blueprint aims to embed #PatientPerspectives across healthcare research and decision-making | Becaris Publishing becarispublishing.com/digital-cont...

Building trust in the European Health Data Space: legal, clinical, and patient perspectives on privacy, AI, and ethics | Becaris Publishing

Building trust in the #EuropeanHealthDataSpace: legal, clinical, and #PatientPerspectives on #privacy, #AI, and #ethics | Becaris Publishing becarispublishing.com/digital-cont...

Cancer, precision medicine, and Atlantic Canada: A priority setting exercise by the Atlantic Cancer Consortium Patient Advisory Committee - Discover Health Systems Background Precision Medicine in oncology is a rapidly evolving field aiming to prevent and treat cancers based on detailed patient and tumor characteristics. To better develop research studies, healt...

In case you are looking for reading about the critical role of public members in research to advocacy, I invite you to read this paper by our public partnership: 💗 🥰

link.springer.com/article/10.1...

#AtlanticCanada #Cancer #PrecisionOncology #InnovativeIdeas #PatientPerspectives

The #ISMPP2025 meeting is underway! Don’t miss our sessions today! Details at buff.ly/3oalQSs Stop by booth 18 to connect with our on-site team or e-mail contact@lumanity.com to start a conversation.

#ISMPP2025 #PublicationPlanning #EmpathyInScience #PatientPerspectives #ScientificWriting

Weekly digest: ISMPP Annual 2025, readable research content and identifying misconduct This week, we signpost the Open Pharma activities at the 2025 Annual Meeting of ISMPP and reflect on our workshop at the Researcher to Reader Conference in February. We also read about how journal edi...

📢 Read this week’s #OpenScience news here! 📢

Sign up to our blog to receive your weekly news digest and more straight to your inbox!

#OpenAccess @ismpp.bsky.social l @r2rconf.bsky.social l #ResearchMisconduct #MedPubs #PatientPerspectives #ResearchIntegrity

Attending #ISMPP2025? Don't miss our presentations, and be sure to visit booth #18. Email contact@lumanity.com to schedule time to meet with us in D.C. to learn how we can elevate your strategic #publications program. buff.ly/JEudr0c

#EmpathyInScience #PatientPerspectives #ScientificWriting

A promotional graphic for ARVO 2025 featuring Avril Daly, CEO of Retina International. A black and white portrait of Avril appears in the upper right corner. Text reads: “Avril Daly, CEO, Retina International #ARVO2025 May 4, 2025 from 8:00 AM to 9:45 AM Burden of geographic atrophy and treatment expectations of therapies: perspectives from patient-driven research funding and support organizations.” Retina International’s colorful logo is at the bottom right. The background is a dark blue-gray with pink and lavender design elements.

A promotional graphic for ARVO 2025 featuring Dr. Nabin Paudel, Head of Research & Programmes at Retina International. A black and white portrait of Dr. Paudel appears in the upper right corner. Text reads: “Dr. Nabin Paudel, Head of Research & Programmes, Retina International #ARVO2025 May 6, 2025 from 3:30 PM to 5:15 PM Accuracy and Readability of ChatGPT-4o Generated Responses to queries on Age-related Macular Degeneration for Patient Education and Counselling.” Retina International’s colorful logo is at the bottom right. The background is a dark blue-gray with yellow and beige design elements.

Retina International is gearing up for @arvoinfo.bsky.social where Avril Daly and Dr. Nabin Paudel will present two important poster sessions on:
- Patient-driven insights into Geographic Atrophy
- Using ChatGPT-4o to support AMD patient education
📅 May 4 & May 6
#PatientPerspectives #AIinHealthcare

Join the 2buds 1shroom Discord Server! Check out the 2buds 1shroom community on Discord - hang out with 388 other members and enjoy free voice and text chat.

🍃A place to learn and share info & experiences from other patients and their own perspectives!

#wellness
#mentalhealth
#depression #therapy
#ketaminetherapy
#VitaminD #magnesium
#vitaminDdeficiency
#patientperspectives
#alterativehealing
#healing #naturalhealing

discord.gg/PNVHkujD

Patient and Provider Perspectives of a Web-Based Intervention to Support Symptom Management After Radioactive Iodine Treatment for Differentiated Thyroid #Cancer: Qualitative Study Background: Patients diagnosed with differentiated thyroid #Cancer (DTC) who receive radioactive iodine (RAI) treatment experience acute, medium, and late treatment effects. The timing and severity of these effects varies by individual; common…

JMIR Formative Res: Patient and Provider Perspectives of a Web-Based Intervention to Support Symptom Management After Radioactive Iodine Treatment for Differentiated Thyroid #Cancer: Qualitative Study #ThyroidCancer #DTC #RadioactiveIodine #CancerTreatment #PatientPerspectives

We connect parents with experts, research, and each other. Support networks matter, and we believe peer support is essential to care. Families need community as much as medical guidance. More on that here: www.tapssupport.com/positio...
#TAPSSupport #Connections #PatientPerspectives

This week, we’re reintroducing TAPS Support - Education is vital. We provide clear, accurate information, create resources, and emphasize shared decision-making to improve care. #TAPSSupport #PatientPerspectives #Education #MultipleBirths

COVAD Survey #autoimmune #rheumatology #immunology #patientperspectives #rheumsky #medsky

⬇️
www.surveymonkey.com/r/TV6JF75

Living with a RET gene mutation: patient perspectives Multiple endocrine neoplasia type 2 (MEN2) is the collective term for two distinct types of autosomal dominantly inherited neuroendocrine neoplasm syndromes: MEN2A and MEN2B (or MEN3). MEN2 is charact...

Living with a RET gene mutation: patient perspectives
in Endocrine-Related Cancer, Authors: Caroline Brain, Joanna Grey, and Kirstie Purnell

🔗 doi.org/10.1530/ERC-...

#endosky #RET #RETgene #MEN2 #MEN2A #MEN2B #endocrinecancer #MTC #medullarythyroidcancer #patientperspectives #RET@30

I’m only saying what’s true. When @theresisters.bsky.social interviewed you, I listened very closely, still have my handwritten notes, & I listened to your experiences and you told us that patient perspective, experiences are valuable & real.
It’s not in my head. #patientperspectives

#ACR24 #countdown
#PatientPerspectives

💬"Implementing “My Knee Notes” helped me manage my knee health more confidently and effectively. The tool strengthened the patient-provider relationship, leading to more personalized care."

t.co/gLhpBWdtig

Support Groups and Chronic Illness: Finding Social Support Among Peers - ACR Meeting Abstracts Background/Purpose: Like many lupus patients, my journey has been long, complex, and difficult. I began experiencing symptoms in 2019. Over the next five years, I worked with 17 doctors over nine different specialties as I tried to find a reason—and a solution—for my increasingly debilitating symptoms. Eventually, I was diagnosed with undifferentiated connective tissue disease, […]

#ACR24 #countdown
#PatientPerspectives

💬"Our chronic illnesses haven’t been resolved by our support group, but our challenges are much more bearable with each other."

#ACR24 #countdown
#PatientPerspectives

"For many BIPOC individuals with chronic illness, BIPOC-only spaces are crucial for fostering community, building trust, and addressing complex topics often challenging in non-BIPOC spaces."

t.co/s78ZBN3Oub

How Completing a Systematic Literature Review Improved How I Research My Own Rheumatoid Arthritis and Comorbidities - ACR Meeting Abstracts Background/Purpose: Twelve years ago, I was diagnosed with rheumatoid arthritis (RA). Initially, I was hopeful that the first biologic DMARD would slow the disease and relieve my symptoms. After trying eight different biologics and biosimilars, I found a regimen that effectively manages my RA symptoms. When gastrointestinal issues began, I set out to find answers. […]

#ACR24 #countdown
#PatientPerspectives

"How Completing a Systematic Literature Review Improved How I Research My Own Rheumatoid Arthritis and Comorbidities"

#ACR24 #countdown
#PatientPerspectives

💬"Allowing me to manage my care and advocate for myself in medical appointments, even as a pediatric patient, prepared me for the transition to adult care."

t.co/IVxIJDkZpz

#ACR24 #countdown
#PatientPerspectives

"A program in which paediatric rheumatic disease patients and their parents create meaning in their experiences."

t.co/cobpRu3Dh4

Living Well with a Rare Rheumatic Disease – Becoming a “Precision” Patient on the Horizon of Precision Medicine - ACR Meeting Abstracts Background/Purpose: My journey with a rare, chronic, relapsing rheumatic disease began in November 2010 with a variety of seemingly unrelated symptoms:  migrating joint pain, night sweats, sinus conge...

#ACR24 #countdown
#PatientPerspectives

💬"I’ve fine-tuned my management of my disease toward being a “precision” patient."

acrabstracts.org/abstract/liv...

My Journey with Diffuse Scleroderma and Interstitial Lung Disease: A Pharmacist’s Perspective - ACR Meeting Abstracts Background/Purpose: Since my diagnosis with diffuse scleroderma and ILD, I have balanced the roles of patient and young pharmacist. A duality that has surely impacted my approach to managing my condit...

#ACR24 #countdown
#PatientPerspectives

💬"Since my diagnosis with diffuse scleroderma and ILD, I have balanced the roles of patient and young pharmacist."

acrabstracts.org/abstract/my-...