Discover and read the best of Twitter Threads about #Patients

Most recents (24)

#PatientCentric care, #PtExperience #Tokenism, #HoldingSpace #WeAreBetterTogether ⚠️ long thread.
Recently I attended a meeting of an organization whose focus is in improving #healthcare. This is a highly respected organization. One ☝🏼 of their founding principles is the 1/
engagement of various #stakeholders including #patients and #caregivers. This was not the 1st meeting of this org. I have attended. I walked away from this particular meeting sad, frustrated & a bit angry. The topic was on #patientcentric care. A topic that is near & dear 2/
to me. The caliber of individuals involved was spectacular; academics, researchers, consultants. As I scrolled through participants as well as listened to the conversation and watched the comments come across the screen I was enthralled with the dialogue however 3/
Read 21 tweets
If #HealthCare positions itself as public priority number one during a #pandemic, then it goes without saying #nurses in fact perform a critical and central role in delivering said #health care. #NursesWeek2021 #NursesWeek #NursesDay #NursesMonth #Nursing #NurseTwitter #Nurse
By not only advocating for #HealthPromotion in general, but by also educating #patients directly and the public at large of the preventive measures necessary to avoid illness and injury, it's not an exaggeration to call #nurses out as #noble..
...or, at the very least their selfless #professional #nursing pursuits can be considered as such. Conjoined with providing actual #MedicalCare AND assisting with #rehabilitation AND providing emotional & psychological #support AND...
Read 5 tweets
I’ve continued to see a divide in #pain community, a lack of support as well as pretty blatant attacks. My position: none of us speak for the entire community. We all have are personal stories. Each is unique and sacred. Pain occurs on a continuum and there are 1/
a variety of variables involved. As a parent what I want is a wider variety of options that is paid by insurance, I want voices to be heard, I want individual care, transparency and partnership with physicians & HCP. I want accessibility in the community I live 2/
I want a coordinated approach that is patient and family centric that takes into account barriers of treatments. When I say I want a variety of strategies & treatments I absolutely mean it. My kids have utilized ACT and CBT in a variety of settings. Sadly in only 3/
Read 15 tweets
1. Point Sanitaire 23/04 #Genève

-Quasi que du #variant #britannique
-Quelques variants #brésiliens / #sudafricains
dont contamination intra-communautaire (pas que retours de voyage). #Enquêtes d'#entourage précise et + intense pour ces variants
-Pas variant #indien pr l'instant
2. Vaccination #Genève
▪️74 et +: Bcp de vaccinés doses 1+2
▪️65-74: bcp de 1ères doses, pas encore de 2ème (ça ne fait pas 4 sem. que vaccination ouverte)
▪️45-64: bcp de #vaccinosenthousiastes ds cette tranche d'âge. Vaccination a commencé. #Palexpo
3. Vaccination #Genève

Aujourd'hui

▪️Priorité 1:
- 65 et+
- femmes enceintes avec critère vulnérabilité

▪️Priorité2:
- 45 et+
- collaborateurs (prof de santé)
- personnes avec critère de vulnérabilité qq soit âge
Read 18 tweets
@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz First, reaction to what #patients think about the new #UniversalDefinition ... A step forward ... ? But it is still #failure Should be #FunctionNotFailure /2
@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz What about #CHD "Does this mean I was at risk when I was born?" ... "I could be at risk for HF, but how am I to manage my days is still missing ... " "It's nice that there are categories, but how do you translate that to people who need to process it?" /3
@HeartLifeCanada @pumpinghearts @MarcBains @iamnickevans @ShelleyZieroth @dranulala @robmentz "You can go back and forth between stages" ... at least HF and Advanced HF. The NYHA classes seem to recognize the transient nature..." Heart failure should remain heart failure, but clinics should be #FunctionNotFailure /4
Read 9 tweets
1/
Don't look at it as a JOB

See it as one's DUTY.

A patient is a doctor's extended #family

The art of #medicine goes well beyond the realm of a 'work-shift'

There is no current proven role of #herbal medicines in #cancer even though a lot of basic #science work is ongoing +
2/
Oral cancer is treatable condition. Please C Indian Clinical Practice Guidelines for oral cavity cancer bit.ly/3vnJoWJ

Ther R guidlines formulated for management in low resource areas too onlinelibrary.wiley.com/doi/full/10.10…

None of these feature #herbal drugs or #Ayurveda +
3/
The professor mite B right in his own terms, but not scientifically

A student must B able to rise to the occasion & correct/question his/her teacher if need B - this is truly success of practical education

Neither the professor, nor the patient, knws abt effect of herbals
Read 6 tweets
You shouldn't seek to prove your hypotheses right. *If you're a scientist, you should only seek to prove them wrong.* This is widely accepted & has been naturalized long enough to be normative. So WHAT are we doing to pain patients?

#Science #EpistemicViolence

🔽 Thread 🔽
It appears a twisted form of methodological skepticism is being forced on us. #Patients are routinely told by psychologists, who don't treat physical diseases or injuries, that the psychologists' & drs' Cartesian doubt about a patients' subjective knowledge of their OWN ...
physical experience, is a MEDICAL TREATMENT. What do I mean?

Translation: Patients must simply accept that pain is inherently in one's own mind because perceptions of one's own sensory in/output are interpreted by the brain via electrical impulses. "I think therefore I am."
Read 21 tweets
Daily Bookmarks to GAVNet 01/01/2021 greeneracresvaluenetwork.wordpress.com/2021/01/01/dai…
Beyond Climate War: Writings on Deep Adaptation to societal collapse

jembendell.com/2020/12/31/bey…

#SystemsChange #adaptation #ClimateChange #conflict
“Those of Us Who Don’t Die Are Going to Quit”: A Crush of Patients, Dwindling Supplies and the Nurse Who Lost Hope — ProPublica

propublica.org/article/those-…

#supplies #hope #patients #nurse #COVID19
Read 10 tweets
Hello #chronicillness friends. This is a very important thread. Recently @sciam published a promotional (instead of journalistic) article promoting the idea that functional neurological disorder (FND) is a legitimate neurological illness instead of repackaged hysteria. 1/
Many physicians have denied what we experienced patients, particularly women, know to be the truth: FND is the newest hysteria term they are pushing very hard to sound like something “new.” Recently this discussion was discovered on Reddit that proves what we knew all along. 2/
FND is a wastebasket drs use to fool patients into thinking they’re being taken seriously when in they actually want to punt them on mental health for their own convenience. They do not give a crap about your well-being. @DianeOLeary has discovered this in medical literature. 3/
Read 7 tweets
Did you miss the talk "Panorama of #lupus in 2020?" I did yesterday for @LupusEurope?

No worries, I'm starting a #tweeter #SLE #thread so that you can pick up the slides you're interested in 👍

Check below for the SLIDES ⬇️
Slide #1
Current classification of #Lupus
Slide #2
What is #lupus #SLE
#Lupusawareness
Read 18 tweets
ATTN #CBD stakeholders: @US_FDA today holding scientific conf. on CBD/other #cannabinoids. I'll be live tweeting throughout. Not sure we'll get much insight on immediate path forward for consumer products but I'll share noteworthy observations. Agenda: bit.ly/3pHXU8V
I'll be paying particular attention to @DrAbernethyFDA's remarks at 9:05a (head of #FDA's #CBD Policy Working Group) and @DThrockmortonMD's keynote at 9:15a (one of Agency's principals for regulating R&D, manufacture & marketing of #cannabis & cannabis-derived #drug products).
And we're underway! First up is Kaveeta Vasisht, MD, PharmD. Associate Commissioner for Women’s
Health and Director, Office of Women’s Health, FDA. She's noting ubiquity of #CBD products in marketplace, many of which are targeted to #women.
Read 56 tweets
It's now time for the third and last conference of the #OAFIPreCongress2020, The impact of #COVID19 pandemic on OA Research, with Professor Ali Mobasheri, President of OARSI, Dr. Leigh F. Callahan, Director Osteoarthritis Action Alliance (OAAA) and ... (1/2)
... Professor @ProfDavidHunter , Florance and CopeChair of Rheumathology at the @Sydney_Uni. The moderator is @DrJosepVerges, President & CEO of OAFI Foundation.

#OAFIPreCongress2020

You can follow this conference here:
For OAFI is really important the collaboration between diverse organitzations in order to help improve the quality of live of #oasteoarthritis patients. One example of that is the cooperation between OAFI and @OARSInews and further collaborations with @oaactionallianc.
Read 8 tweets
We start the second conference of #OAFIPreCongress2020,
Patients and Public Involvement (PPI) in the peer review publication process, with Dr. Ciaran Fitzpatrick, Editor BMC Musculoskeletal Disordes, with Mr. Jonathan Collin, Journal Development Editor BioMed Central and ...(1/2)
@AmyPricePhD, The BMJ Editor, Research and Evaluation Editor (Patient and Public Partnership). The moderator is Professor Krysia Dziedzic, Arthritis Research UK Professor of Musculoskeletal Therapies at @KeeleUniversity.

Watch the Pre-Congress live here:
@AmyPricePhD, The BMJ Editor, Research and Evaluation Editor:

"Patients are involved in every paper we produce in @bmj_latest."

"We have teams of patients and researchers working together and improving the quality of publications".

#OAFICongress2020
Read 6 tweets
Now it's time for the first conference of the #OAFIPreCongress2020, Pre & Clinical Research with OA Patients, with Dr. Mariana Vitaloni, Professor Ali Mobasheri and @DrJosepVerges. You can watch the Pre-Congress live here:
The moderator is Professor Krysia Dziedzic, Arthritis Research UK Professor of Musculoskeletal Therapies at @KeeleUniversity.
Follow the conference live here:
Professor Ali Mobasheri, president of @OARSInews:

"The cooperation of OARSI and OAFI is a perfect example of the collaboration between researchers and patients."

#OAFIPreCongress2020

Watch it live here:
Read 10 tweets
#PainKills
I am angry tweeting and usually that is never good but I am angry. My heart is breaking for another mother who lost their child to pain. She had her entire life in front of her. Her entire life! For many years she struggled with #pancreatitis. She was 1/
not in an area where there were many #physicians aware of #pancreatitis. I provided the mother names of experts in the field but sadly they never followed up or called. I have often seen this. As a parent I would carry around my husband & kids genetic 🧬 results 2/
in order to ensue that physicians would listen to me. I’d provide them with the names or our specialists. A few times physicians listened many times they did not. So often my husband was questioned about his alcohol use relentlessly EVEN with the test results. It was a 3/
Read 16 tweets
The RED Talk on The #Business and #Science of #Healthcare is now live! Still time to join us at ruralpolicy.group/red.
The next big issue facing NICE & #healthcare will be our relationship with the European Medicines Agency after Brexit; it will impact our #medicines research, trials. We could see a dramatic reduction in research, access to medicine and disrupt the supply of meds - @steve_mccabe
The British #taxpayer makes a phenomenal contribution to the development of new #drugs - but these can then be prohibitively priced. We need to improve access to new medicines and there is a question around cost, access and funding. @steve_mccabe
Read 24 tweets
The only way to solve #surprisemedicalbills is with a #fairIDR. But we need to get to the crux of this #SMB issue.

☑️ Everyone agrees to take #patients out of the dispute b/w #insurer & #doctor.
☑️ Everyone agrees to let the 2 parties negotiate the bills if the initial...

1/6
payment is deemed to be unacceptable.
☑️ Everyone agrees that there must be a fall back to a neutral third party (i.e., an #IDR entity).

⭐️BUT, what is disputed is whether this IDR will be a fair process where both sides can equally make their case for what is the most...

2/6
appropriate amount for that non-contracted service OR whether the IDR will be rigged and so unfair that the insurer will always win the dispute.

Many IDR proposals, sadly, are unfair, pointing the IDR to primarily consider the contracted rates #health insurers make up...

3/6
Read 12 tweets
Cette nuit, j'ai rêvé de ma 1ère #greffe.
#Spoiler, ce n'est pas gai. Ce fût un échec cuisant.
Ms je me suis dit que cela pouvait être intéressant de faire un thread sur les résultats non attendus en transplantation ou même en fin de greffe rénale pour améliorer les parcours. 1/
Mon 1er #jourdegreffe est somme toute banal.
Un appel. Je suis en cours au lycée. Mon père au téléphone me dit qu'un greffon est disponible et qu'il m'appelle une ambulance.
Je lui dis que je dois finir mon cours et je raccroche.
Je bois un coup, et je retourne en cours.
2/
Personne ne l'entend de cette oreille, et je suis convoquée chez le CPE avec mon père au téléphone qui m'engueule et m'ordonne d'aller au centre de greffe sinon il viendra me chercher et ça va mal se passer.
Bon, ok j'ai 16 ans presque 17, un peu rebelle mais pas trop. 3/
Read 30 tweets
Here is an example of exactly HOW NOT to design a study and publish.
A grp of #ayurveda vaidyas published:💡Clinical Improvement In #COVID19 #patients With Timely Intervention Of Panchagavya: Preliminary Finding
💵International Journal of Pharmacological Research
1/n
#MedTwitter Image
First, choice of #journal. Choose one indexed in valid scientific databases - eg @Scopus, Medline @NCBI, @embase, @EBSCO, @webofscience. International Journal of Pharmacological Research is indexed👇😶
Just bcoz its on Google doesn't mean its quality. #pseudoscience #fake
2/n Image
There R indexed and impactful journals charging #openaccess fee (eg @JHEP_Reports) if the institute can afford it. Most quality indexed, impactful journals (eg @HEP_Journal) dont have open access fee to publish, but #Subscription fee for persons to read #published study.
3/n Image
Read 14 tweets
Addressing #PatientSafety in Healthcare:

I received a call tonight from a mother whose adult daughter was brought via ambulance to the ER. She was in the middle of #pancreas flare. She is 19 & is living with bf. He is the one that made the call. She was in the bath at time 1/
and due to pain and nausea could not get out. Paramedics took her from tub. She had no clothes on (totally understand this was emergency). During transport to ER ketamine and fentanyl were administered. Once at ER she was NOT taken back to bay, instead she was 2/
placed in the lobby on chair. She was left alone in lobby. Her bf was there but no one was monitoring vitals or reactions of medication. The young woman was disoriented. Her boyfriend unsure what to do. While they are ‘adults’ they are young 18/19. The young women 3/
Read 12 tweets
#PainAwarenessMonth
#Pain impacts all areas of ones lives. It’s difficult to address. The current climate around those with #chronicpain is full of stigma & biases. The narrative that #opioids are bad & do not assist those w #pain or that there are a plethora of non-opioid 1/
continues to impact those that have #chronicpain negatively. IF you have #chronicpain you are acutely aware that care for those in #pain is poor in the USA. There may be ‘pockets’ where one can access superb care but I believe it is few & far between. We did NOT need the #CDC 2/
guidelines. They were Honecker by an ‘expert’ group whose sole focus was on #SUD NOT the treatment of pain. I believe they took the guidelines and encouraged the misapplication of these guidelines. Instead work should have been done to focus on better treatment options 4 those 3/
Read 11 tweets
#StopTheStigma
#PainAwarenessMonth
The number of #patients with #chronicpain being harmed due to false narratives re #opioid #pain medication continues even while #CDC revisiting guidelines as they know it has been misapplied & manipulated by anti opioid entities 1/
Untreated #pain does harm in so many ways. Imagine a mother having to beg for her child not to have to lie withering in a hospital bed in pain due to #hereditarypancreatitis. Being told to have her daughter use #GuidedImagery to address the horrible pain. This is criminal 2/ Image
Imagine having your children begging to just die due to pain. This has been common for many kids w #pancreatitis due to lack of addressing their #pain. #EssentialOils, #GuidedImagery, #Accupuncture will NOT work in the middle of a flare. It is criminal that this still occurs 3/
Read 3 tweets
I truly believe this is why ⁦@SanfordHealth⁩ is able to get away with all it does. #DennySanford is powerful and a contributor to #republican party. Both SD and ND are red states. Money talks.
#Sanford’s first priority has NEVER been 1/ argusleader.com/story/news/202…
about #patientcare or EVEN about their employees. It has been and is about #money & #power. #Patients & #caregivers needs concerns ignored & complaints to government entities go unheard. Employees provided the worst #healthcare policies ever. #Sanford needs to 2/
truly engage with #patientadvocates if they want their imagine to change. Without his #money & #power they have less protection. Very sad and cynical thing to say but I truly believe it. 3/
Read 3 tweets

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