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How to Apply Your Empowerment Skills to Your Health Journey #patientchat Highlights

Last week, we hosted our third Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Panel

Top Tweets

What are some frustrations you are dealing with right now?


What is the biggest hurdle you’ve had to overcome in your health journey?


What are your go-to trusted resources and how did you find them?


Full Chat


For a list of all past #patientchat topics and transcripts, click here.

Asking the Right Questions at the Right Time #patientchat Highlights

Last week, we hosted an Empowered #patientchat titled “Asking the Right Questions at the Right Time: Navigating Your Path to Empowerment”. Below you will find the top tweets and the full transcript from the conversation on Twitter.

Top Tweets

Your Goals Matter


The Importance of Self-Advocacy and Support


Full Chat

Best Practices for Sharing Your Patient Story #patientchat Highlights

Last week, we hosted an Empowered #patientchat titled “Best Practices for Sharing Your Patient Story” with special guest The Patient Story (@Patient_Story). Below you will find the top tweets and the full transcript from the conversation on Twitter.

Top Tweets

Sharing Your Story Can Help Others


A Free Public Speaking Toolkit


Don’t Give Weight to Other People’s Thoughts


Full Chat

Building Resilience and Boosting Immunity #patientchat Highlights

Last week, we hosted our second Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Panel

“We can’t talk about frustrations without talking about resilience because that’s really how we manage these frustrations, how we bounce back, how we maintain our mental health and our physical health during these difficult times”

– Dr. Rochester

What is Resilience?

“Resilience really is about coming home to ourselves, to our center. We want to accept ourselves where we are, shine a light of awareness and sensitivity on ourselves with tenderness and with love. That’s what mindfulness can do for us.” – Broderick

“We all have things in life we have to deal with. What are the silver linings, what are the hidden blessings? Resilience really is how to jump back into your life” – Jill

How Do We Build Resilience?

“When i first was diagnosed, I did a lot of Bible journaling and some quiet inward time to think about it, and that really helped. Building community is a real big part. You need to connect with your family, your friends, and the people that are out there and let them help you. Focusing on personal health, things like yoga and meditation are huge, eating well.” – Jill

Boosting Immunity

Walking

  • Forest Bathing
  • Getting out into Nature
  • Dancing with “IV”
  • One step at a time

Eating Well

  • Dinner with family
  • Phase out added sugar
  • Smoothie game: Guess what’s in this one!

Stress Reduction

  • Breathing exercises
  • Mitigating suffering added by your own mind
  • Mindful acceptance and non-judgment

A Timeless Call to Action

It’s a matter of picking up the pieces, looking forward, and figuring out what you need to do next and what’s important to you. Be true to yourself… Cancer or any serious life-threatening thing really puts it in perspective. What you want to do with the rest of your life? – Gerri

Top Tweets

“Current me is where the fun is”

Alan's Top Tweet


Resilience Comes from Hope

Barby's Top Tweet


The Present is the Only Thing We Can Control


Full Chat

Ending Isolation: Tips for Connecting & Resources for Support Empowered #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Ending Isolation: Tips for Connecting & Resources for Support Empowered alongside NORD. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat


For a list of all past #patientchat topics and transcripts, click here.

Patient Access: Let’s Talk Health Care Technology #patientchat Highlights

Last week, we hosted an Empowered #patientchat on Twitter titled Patient Access: Let’s Talk Health Care Technology. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Increased Engagement Across Social Economic Boundaries


Ways to Improve Patient Access


Health Literacy Matters


Full Chat


For complete list of #patientchat topics and transcripts, click here.

Virtual #patientchat Highlights

Community Matters: MD and Patient Authored Tips to Help You Stay Involved

Last week, we hosted our first ever Virtual Empowered #patientchat. The Virtual Empowered #patientchat was a moderated 45-minute conversation conducted online via Zoom and Facebook Live along with a lively discussion on Twitter. Below you will find the highlights from the online events and highlights from the conversation on Twitter.

Virtual #patientchat Highlights

Is Telemedicine a Useful Tool?

“I was experiencing some symptoms of COVID and I made an appointment with my PCP. We went over the symptoms and I tested negative for the antibodies, but I didn’t have to go in at the time when it was crowded.” – Mel

“I have always felt that we have under-utilized telemedicine. There is so much that can be done via a telemedicine visit.” – Dr. Rochester

“One of the best things I’ve seen from telemedicine is for a lot of people with physical ability issues or anything like that, or a really bad migraine or if you have a chronic illness that fluctuates every day. What if you make an appointment in December and it comes up a couple months later and you don’t feel good that day. You can still have the access to your provider and talk through any concerns or even potentially get help for a flare or things like that.” – Alexa

At Wits’ End?

“Be kind to yourself. Extend compassion to others. Find an emotional accountability partner. Write down a list of loved ones whenever you think of them so you remind yourself to check in later.” – Honora

Coping Tools

  • Don’t just zoom. Try online games with your loved ones!
  • Schedule virtual coffee or tea
  • Join a wellness challenge!
  • Take care of yourself

Community Empathy

It is normal to feel anxiety right now. Mel recommends finding the techniques that manage it best for you like doing some daily exercise to get your vitamin D. Stay focused: it’s a marathon not a sprint.

A Timeless Call to Action

“Reach out to others. You can physically distance without sociallydistancing. Pick up the phone, call someone, do a zoom call or facetime or skype, but don’t let these trying times prevent you from staying connected with your community and even from creating a brand new community.” – Dr. Rochester


Top Tweets

Sometimes You Need to Unplug


Enhancing Digital Health Literacy


Stories Are Still Important


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

Community Check-In #patientchat Highlights

Last week, we hosted a “Community Check-In” #patientchat with Amanda Greene (@LALupusLady). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Telehealth to save the day?


Online communities won’t be canceled


Use social media to find patients like you


Full Chat

For a full list of past #patientchat topics and transcripts, click here.

Best Practices for Participating in a Patient Community #patientchat Highlights

Last week, we hosted an #patientchat on “Best Practices for Participating in a Patient Community” with Carly Flumer (@carlyflumer). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Dos and Don’ts


A Good Online Community


Always Somebody There


Full Chat

Cutting Through the Panic in a Pandemic

It’s been an interesting year so far, 2020. We – as a nation, as a global tribe, as a species – find ourselves on the front lines of what feels like the zombie apocalypse, or at least a documentary version of the Steven Soderbergh movie Contagion. It seems like every day brings worse news, and you could be forgiven if you thought that many national governments got caught flat-footed by the virus that’s led to a global pandemic.

Since my chosen role here on the PEN blog, and pretty much everywhere else, is as a reporter-analyst who works to break complex, sometimes scary, topics into digestible nuggets, this month I’ll highlight some of the sources and experts I rely on to keep me from Panic City in our current pandemic.

As a journalist, I learned the two-source confirmation rule, where a fact isn’t verified until two sources confirm it. I still use that rule today, but it can be challenging with the tsunami of “facts” being presented – often contradicting each other – in a fluid situation full of uncertainty. Like, say, a global pandemic.

Uncertainty is something the human brain is wired to avoid, with our most basic cognitive functions, the ones that have been in human brains since early Cro Magnon times, set to make quick decisions on threats. Slowly assessing information is most certainly not a basic human function, since that saber-toothed tiger – or microscopic virus – is coming our way. Which makes processing a flood of information about inbound threats challenging, and fact-checking both difficult, and deeply necessary.

With all that said, here’s my list of trusted sources:

  • Eric Perakslis – Eric is a former FDA Chief Scientist, now a Rubenstein Fellow at Duke University. He’s fought ebola on the ground in Africa, working with MSF. His input on cybersecurity, case surveillance, epidemic management, and common sense in all of the above is an anchor point for my understanding of what’s going on, and what might be on deck next.
  • Helen Branswell – Helen works the infectious diseases beat for STAT News. She fact checks like a pro, since she is one. STAT and Helen are reliable sources for news about COVID19.
  • Eric Topol (I guess I like guys named Eric?) – This Eric is a cardiologist, scientist, and writer who’s speed-reading the latest emerging science on COVID19, and sharing it with his take on what it means for fighting the pandemic. He shares PDFs and images of paywalled articles, which is a big bonus.
  • Marc Lipsitch – Marc is a Harvard epidemiologist who models infectious diseases for a living as director of Harvard Chan Center for Communicable Disease Dynamics (CCDD) – I use his Twitter feed as a reality check on any breaking news about coronavirus models.
  • Zeynep Tufekci – Zeynep has been on or near the front lines of social change around the world in her role as a sociologist focused on the interaction of humans and tech, and how that impacts human behavior, particularly in groups. Her book Twitter and Tear Gas: the Power and Fragility of Networked Protest is a great read, too, for while you’re cooped up in our physically-distancing times. Her take on group-think and group-behave is illuminating.
  • Charlie Warzel – a longtime information war correspondent, Charlie ran the Infowarzel channel at Buzzfeed before moving to the New York Times opinion pages, still covering the information/disinformation/misinformation pandemic that was drowning us … until an actual pandemic showed up, making that disinformation and misinformation even more deadly to human life.
  • Farzad Mostashari – an MD and health data interoperability evangelist, Farzad led national efforts at creating interoperable health data infrastructure at HHS under the Obama administration, then founded a tech company that helps primary care practices leverage their data for better patient care. Public health emergencies require ALL the data be shared – Farzad points out the gaps.
  • Snopes’ Coronavirus Collection – Snopes has been a great resource for figuring out if the latest OMG headline(s) about anything were true, false, or somewhere in between. They’ve set up a collection of resources on their site that’s a living project, with new information added as it happens.

As a bonus-round addition, here’s something just for patient communities:

This list is not exhaustive, or comprehensive. It’s my sanity clause in this challenging time – I encourage you to use it, share it, and add to it (hit me up on Twitter, my handle is @MightyCasey). The key is to find sources of scientific, factual truth, not noise.

And for those times when you just-can’t-even with inbound news, you can check out the PEN Activity Guide for a mental break.

Stay safe. Stay well. Wash your hands. And wear a mask if you go out.

Cyber Hygiene: What Is It and Why Does It Matter? #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “Cyber Hygiene: What Is It and Why Does It Matter?” with Casey Quinlan (@MightyCasey). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Keep Your Online Info Safe


Physical Distancing 


Everything is Connected


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

Removing Barriers to a Successful Patient-Provider Relationship #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “Removing Barriers to a Successful Patient-Provider Relationship”. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Holistic Medicine


“Equified Partnership”


Keys to a Good Patient-Provider Relationship


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

Driving Change: How Rare Disease Patients Can Get Involved #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “Driving Change: How Rare Disease Patients Can Get Involved” with RDMD (@rdmd). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity


Continued Discussion


Culture Change


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

Disparities in Care: Equality vs. Equity #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “Disparities in Care: Equality vs. Equity” with Diverse Health Hub (@DHealthHub). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Equality vs. Equity


Continued Discussion


Culture Change


Full Chat


For a full list of past #patientchat topics and transcripts, click here.

What Does Patient-Centric Care Look Like For You? #patientchat Highlights

Last week, we hosted an Empowered #patientchat on “What Does Patient-Centric Care Look Like For You?” and the #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Focus on Patient Activism


Patient-Centric = Viewing Patients as a Whole Person


All Patients Have Different Needs


Full Chat


For a list of all past #patientchat topics and transcripts, click here.

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