Posts

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

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

Last week, we hosted an #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

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

Last week, we hosted an #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

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

Last week, we hosted an #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

Disparities in Care: Equality vs. Equity #patientchat Highlights

Last week, we hosted an #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

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.

Patient Access: Let’s Talk Health Data #patientchat Highlights

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

Top Tweets

Health Literacy is Key


“Data can help others learn!”


First, De-Indentify and Anonymize Data


Full Chat


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

A Year in Review: Looking Back on 2019 and Ahead to 2020 #patientchat Highlights

Last week, we hosted an #patientchat on A Year in Review: Looking Back on 2019 and Ahead to 2020. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Patients Own Their Data


Collaboration Means Everyone


Find Something You Enjoy


Full Chat

Holiday Hacks: Tips for Coping with Chronic Illness During the Holidays #patientchat Highlights

Last week, we hosted an #patientchat on Holiday Hacks: Tips for Coping with Chronic Illness During the Holidays. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Celebrate What You Can Do


But How Are You Really Doing?


Don’t Assume Anything


Full Chat

Social Determinants of Health (SDOH) w/@askdrfitz and @HealthSparq #patientchat Highlights

Last week, we hosted an #patientchat on the social determinants of health (SDOH) with HealthSparq (@HealthSparq) and Dr. Lisa Fitzpatrick (@askdrfitz). The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets

Social Determinants of Health Are A Systemic Issue


There Are Many Social Determinants of Health


Full Chat

Events

Best Practices for Sharing Your Patient Story #patientchat

You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion with The Patient Story on the best practices for sharing your patient story.

The Patient Story is a community of cancer patient and caregiver voices with one goal: humanize every diagnosis. They interview recent survivors and put their stories up in FAQ-format with treatment timelines to help newly-diagnosed patients and caregivers better understand what they may be dealing with during and after treatment. Join us at ThePatientStory.com.

Guiding our discussion will be the following Topic (T#:) Questions:

T1: Why do you think it is important to share your patient story? #patientchat

T2a: How did you handle sharing your diagnosis with your family and friends? #patientchat

T2b: If you have children, how did you approach telling them? #patientchat

T3: How did you decide when the right time was to share your story? #patientchat

T4: What are your tips for deciding how much to share about your diagnosis? #patientchat

T5: Where can you go to share your story? #patientchat

T6: For those of you who have been telling your story for a while, what do you wish you would have known before you did so? #patientchat

We hope to see you Friday, August 7th on Twitter (or tchat.io/rooms/patientchat) at 10:00 am Pacific / 1:00 pm Eastern. Be sure to include the hashtag #patientchat in all your responses!


Empowered Patient Chats (#patientchat) are held every other Friday at 10:00 am Pacific / 1:00 pm Eastern and during the chat patients and advocates come to learn from each other and discuss topics of interest to empowered patients.

Click HERE to learn more about the Empowered #patientchat Series plus read tips on how to participate.

I'll be at the Empowered #patientchat with @Patient_Story on Fri 8/7 1pm ET. Join me! Click To Tweet