Using our role as ‘professional patients’ to learn and pay it forward Columnist Kerry Wong considers herself a "professional patient," which means she has much to offer others this Sarcoidosis Awareness Month.

Knowledge is power. That’s especially true when it comes to chronic illness, especially w/ a rare disease like #sarcoidosis, as I share in this week’s Sarcoidosis News column.
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sarcoidosisnews.com/columns/usin...
#SarcoidosisAwarenessMonth #PatientEducation
#ChronicIllness #RareDisease #SpoonieSky

#HAE #HereditaryAngioedema #RareDisease #RareDiseaseAwareness #Angioedema #Bradykinin #AllergyAndImmunology #PatientEducation #HealthAwareness #GeneticDisease #HAEAwareness #BioNews #AngioedemaNews

What a fabulous conference!‼️

europeanlung.org/en/get-invol...

#Bronchiectasis #PatientEducation #Pseudomonas #NTMLungDisease

You and MPN This resource is intended for patients with myeloproliferative neoplasms, caregivers, and those who are interested in learning about myeloproliferative neoplasms. You will find expert advice about myeloproliferative neoplasms to help you discuss key issues with your healthcare provider and make important decisions related to management and treatment. Easy-to-understand animations with audio narration, expert video explanations, patient experience videos, slide shows, and educational downloads are available to you.

NEW! We’ve expanded You and MPN, our animated education program, with full modules on ET, PV, and MF. Each module includes short videos, expert FAQs, and patient stories to help you navigate your diagnosis confidently.
 
Explore: https://f.mtr.cool/juwcftdeat
#MPN #PatientEducation

Diagnosis takes time: https://bit.ly/4qHWn16

There is no single test for ALS, so doctors often use multiple exams and scans to rule out other conditions and gather a clearer picture.

#ALS #ALSDiagnosis #Neurology #ALSAwareness #RareDisease #PatientEducation #Bionews #ALSNewsToday

Learn more about clinical trials for rare disease patients in the images in this thread, and on our website at: scge.mcw.edu/patient-care... (3/3)

#PatientEducation #RareDisease #ClinicalTrial

Learn more about clinical trials for rare disease patients in the images in this thread, and on our website at: scge.mcw.edu/patient-care... (2/3)

#PatientEducation #RareDisease #ClinicalTrial

Learn more about clinical trials for rare disease patients in the images in this thread, and on our website at: scge.mcw.edu/patient-care... (1/3)

#PatientEducation #RareDisease #ClinicalTrial

Read more: bit.ly/PickerCLL

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#CLL #ChronicLymphocyticLeukaemia #LeukaemiaAwareness #PatientSupport #PatientExperience #HealthResearch #ActiveMonitoring #WatchAndWait #QualityOfLife #Immunology #CancerCare #HealthcareCommunication #PatientEducation

Newborns who skip the vitamin K shot are 81 times more likely to develop severe bleeding. Idaho pediatricians reported 8 deaths from vitamin K deficiency bleeding in just 13 months. These are not theoretical risks.These are preventable tragedies happening right now. #PatientEducation #DoctorsWhoCode

We’re partnering with the National Patient Advocate Foundation to make healthcare more understandable. New MedEd tools are just the beginning. #Partnership #PatientEducation #NPAF

https://bit.ly/3VRUwJX

The Limits of Viability: What Patients Find Before They Find You | Doctors Who Code When families face periviability, they search before they call. What they find shapes everything. Here is why physician-developers have a responsibility to build better.

Shared decision-making. A NICU glossary. Questions for your consultation.
And unlike a 2018 YouTube video — it updates when the evidence does. 🔄
Read the full piece 👇
🔗 www.doctorswhocode.blog/blog/limits-...
#doctorswhocode #PhysicianDeveloper #OpenMFM #MFM #PatientEducation #Periviability 🩺

Identify common angioedema triggers: https://bit.ly/45haKT9

Learn how to avoid them to reduce your risk of attacks.

#HAETriggers #AttackPrevention #PatientEducation #HealthAwareness #RareDisease #AngioedemaNews #Bionews

Know the differences: https://bit.ly/3ZK99B5

ALS can occur with or without a family history. Understanding whether it is familial or sporadic may help guide conversations about genetics, testing, and care planning.

#ALS #ALSawareness #Genetics #PatientEducation #Bionews #ALSNewsToday

Your patients ask, Patient MedEd answers. We asked @Neurology_Ciara to put our new system to the test — here’s what she had to say. #PatientEducation #MedEd #InfluencerMarketing

Know your state laws: https://bit.ly/3OQdBMg

Cannabis regulations vary widely across the U.S., so understanding what is permitted where you live can help you make informed decisions.

#ALS #MedicalCannabis #HealthPolicy #ALSSupport #RareDisease #PatientEducation #Bionews #ALSNewsToday

We’re partnering with the National Patient Advocate Foundation to make healthcare more understandable. New MedEd tools are just the beginning. #Partnership #PatientEducation #NPAF

https://bit.ly/4n4KBg4

Persistent air leak in the critically ill Persistent air leak (PAL) is an infrequent but challenging scenario in critical care and anaesthesia, most often arising as a complication of lung resection surgery. Patients with PAL are at high…

🎥 Antenatal education is a core component of ERAC. It helps patients engage with care, supports shared decision-making, and improves experience. Educational videos may be especially effective for reducing maternal anxiety.
Read more in the #BJAEd: buff.ly/5oLHBGm
#PatientEducation #Obstetrics

HealthEd 4 Everyone announcement graphic introducing Brittany Zackery as a new board member, featuring her headshot.

We're excited to welcome Brittany Zackery to our Board of Directors!

Learn more about our work at HealthEd4Everyone.org

#HealthLiteracy #HealthEducation #NonprofitLife #VolunteerSpotlight #PatientEducation #HealthAdvocacy #NonprofitBoard

Graphic announcing new talk show episode titled What I Wish I Would've Known After Diagnosis. Headshots of Leila and Deb below the talk show title.

A new diagnosis can bring relief, fear, and uncertainty all at once. Get advice directly from the AiArthritis community for those newly diagnosed with an AiArthritis disease.

🎙️Listen now: zurl.co/R8BV8

#AiArthritis #HealthPodcast #DiseaseManagement #NewlyDiagnosed #PatientAdvice #PatientEducation

Tummy tuck explained simply. No hype. Just facts. This is how medical expertise should be communicated online. DM InstaBrand Productions.#TummyTuck
#PlasticSurgeryMarketing
#AestheticMedicine
#PatientEducation
#MedicalMarketing
#InstaBrandProductions

Your patients ask, Patient MedEd answers. We asked @Neurology_Carlos to put our new system to the test — here’s what they had to say. #PatientEducation #MedEd
https://bit.ly/4ntCKZo

Engaging Patient and Caregiver Partners in Codeveloping a Patient Educational Video for Improving Clostridioides difficile Infection Education: Participatory Co-Design Study Background: Patients with recurrent Clostridioides difficile infection (rCDI) and their caregivers often face considerable uncertainty regarding medical management, including the use of fecal microbiota transplantation (FMT), largely due to the scarcity of accessible and credible educational resources. Codeveloping educational materials with patients and caregivers offers a structured way to address these gaps and ensure that resources reflect the informational, psychological, and emotional needs of patients. Objective: The study team sought to cocreate an educational resource through an iterative process including patient and caregiver partners with lived experience of rCDI to improve C difficile infection education. Methods: This study examined the cocreation process of a patient-centered educational resource between the study team and patient or caregiver participants through a series of focus group (FG) sessions. Five participants took part in 3 serial FG sessions (3-5 participants each) over 13 months. Each FG session was audio recorded, transcribed, and analyzed using the NVivo (version 14) quantitative analysis software. A semantic thematic analysis framework was applied to interpret the results. Key areas of concern and preferred formats were identified following the first FG session. The first version of the educational resource was developed by the study team to address areas of concern and was iteratively refined following feedback from subsequent FG sessions with the study participants. Results: Participants expressed concerns about the lack of credible information on treatment options and their associated risks, especially with regard to FMT. They noted inadequate coverage of C difficile infection recurrence and its physical, psychological, and emotional impacts. Participants expressed a preference for educational resources in video format. On the basis of further feedback, refinements were made to improve pacing, consistency of animation, and narration, incorporating emotional and mental health considerations. The codeveloped video was well received and valued for its clear language, messaging, step-by-step guidance, and overall accessibility and clarity. Conclusions: Our study demonstrated the #feasibility and utility of patient and caregiver involvement in cocreating an educational resource on the management of rCDI, with FMT being a treatment option. Despite efforts to address knowledge gaps and preferences expressed for a video format, uncertainties remain regarding the most effective educational resource format. The integration of patient, caregiver, and study team perspectives contributed to a codeveloped video that addresses unmet needs and is patient centered. However, diverse patient experiences remain underrepresented. Future research should consider including more diverse participants as well as evaluating the effectiveness of knowledge improvement through various educational resource formats and patient health care experiences and levels of satisfaction.

JMIR Formative Res: Engaging Patient and Caregiver Partners in Codeveloping a Patient Educational Video for Improving Clostridioides difficile Infection Education: Participatory Co-Design Study #PatientEducation #ClostridioidesDifficile #HealthcareInnovation #PatientEngagement #CaregiverSupport

https://youtu.be/kGg
#CeliacDisease #GlutenFree #PatientEducation #HealthAwareness #DigestiveHealth #ChronicIllness #Nutrition #AutoimmuneDisease #Wellness #MedicalResearch

#Day17
#Fatigue
#SecondaryFibromyalgia

Fatigue in RA is real.
It’s inflammatory.
It’s disabling.
It’s often under-recognized.
Treat disease activity first.
#PatientEducation #RA

This is how you explain dentistry without the jargon. Real answers. Real trust. We create content that connects. DM us.
#DentalMarketing
#DentistLife
#PatientEducation
#DentalPractice
#ContentThatConverts
#InstaBrandProductions

Requirements for mHealth and Augmented Reality Apps for Patient Education Regarding Colorectal #Cancer Surgery: Focus Group Study Background: The purpose of preoperative informed consent is to provide patients with comprehensive information about their treatment, including risks and alternatives, to enable informed decision-making. However, studies have shown that patients are often unable to understand or remember important information. Mobile health (mHealth) and augmented reality (AR) apps have been identified as promising solutions to improve patient education and knowledge retention. Objective: This study aims to identify the essential requirements for an mHealth app to support informed decision-making for patients with colorectal #Cancer, with a specific focus on the potential of AR for visualization. This research explores the patient and physician perspectives on these requirements, particularly regarding information delivery and visualization to guide app design. Methods: A qualitative focus group study was conducted with groups of mostly patients with colorectal #Cancer and a physician’s group. Topics related to patient education were discussed, guided by a semistructured interview guide covering personal experience; information content; context of use; and acceptance and presentation of content, which included presenting various visualizations in 2D, 3D, and AR. The interviews were transcribed and analyzed using qualitative content analysis. Results: We conducted 4 focus groups with patients (n=23) and 1 focus group with physicians (n=7), for a total of 30 participants. Relevant informational content for the app and its presentation was identified. Patients consistently expressed a desire for personalized, detailed, and visual information about their condition and treatment tailored to their specific case throughout the treatment journey, so they could prepare for the informed consent discussion after diagnosis, prepare for treatment, access guidance and track progress during hospitalization, and access information and resources during recovery after treatment. Patients demonstrated a strong preference for interactive 3D visualizations, while physicians favored simpler 2D images that could be easily integrated into their existing workflow. AR visualizations were seen as a potential tool to provide a general overview of anatomy and surgical approaches but more as a novelty feature and a supplement to more traditional visualizations. Conclusions: An ideal patient education app combines comprehensive content with interactive, customizable visualizations like 3D models and AR and should be accessible throughout a patient’s treatment journey. This study highlights the need for a patient-centered design that balances detailed information with ease of understanding and considering different preferences for visualization modalities and levels of detail.

JMIR Formative Res: Requirements for mHealth and Augmented Reality Apps for Patient Education Regarding Colorectal #Cancer Surgery: Focus Group Study #mHealth #AugmentedReality #PatientEducation #ColorectalCancer #CancerAwareness

Primus Healthcare partnerships makes finding help easier than ever before. Early guidance makes a difference 💙

#HealingJourney #PatientEducation #HealthcareTips #WoundCare #HealthAwareness #EarlyCare #PreventiveHealth #ProviderCare

Free virtual conference aims to empower sarcoidosis community The Sarcoidosis Research Institute is hosting a free virtual conference on April 25 aimed at empowering members of the sarcoidosis community.

Just what we need! Read on to hear from a few of the speakers about what we're bringing to the "Empowering the Patient Journey: Living Well with Sarcoidosis" table ... and then register for the free virtual event!
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sarcoidosisnews.com/news/free-vi...
#PatientEducation #sarcoidosis #SarcStrong

From #ACR2024, new research explores how vitamin D levels and “exhausted” T-cells could shape the future of treatment and disease management.

Read more at ➡️ zurl.co/GzkZy

#AiArthritis #ChronicIllnessSupport #VitaminD #PatientEducation