Tag Archive for: #patientchat

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

Patient Experience: Let’s Talk Patient Burnout #patientchat Highlights

Last week, we hosted an #patientchat on the patient experience and patient burnout. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets


Burnout Is Real and Normal


Many Factors Can Lead to Burnout


Full Chat

Open Mic #patientchat Highlights

Last week, we hosted an Open Mic Empowered #patientchat. The #patientchat community came together for an engaging discussion and shared what was their mind.

Top Tweets


“How do you keep focused on yourself and the things you have rather than what you don’t?”


Mental Health’s Stigma


Mental Health Should Be Apart of Care Coordination


Full Chat

How to Read and Understand Scientific Research #patientchat Highlights

Last week, we hosted an Empowered #patientchat on how to read and understand scientific research. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Understanding Scientific Research Is Critical


Science should be accessible to all


“The whole of science is nothing more than a refinement of everyday thinking”


Full Chat

Managing the Emotions of a Chronic Illness #patientchat Highlights

Last week, we hosted an Empowered #patientchat on managing the emotions of a chronic illness. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Step One: Acknowledgement


Emotions Aren’t “Negative” or “Positive”


“We all deserve the freedom to express feelings all the time”


Full Chat

How Does An Empowered Patient Approach Care Coordination? #patientchat Highlights

Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Care Coordination Means Everyone Is Working Together

 

 

 

 


You Are Your Own Best Advocate

 

 

 

 

 

 

 


Work For What You Deserve

 

 

 

 


Full Chat

Leveraging Social Media for Patient Advocacy #patientchat Highlights

Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.

Top Tweets and Advice


Social Media Helps Your Connect with Others

 

 

 

 

 

 

 

 

 

 

 

 

 


Just Start

 

 

 

 


Think About When You Were Sick

 

 

 

 


Full Chat

 

Patient Access: Let’s Talk Healthcare Conferences #patientchat Highlights

Last week, we hosted an Empowered #patientchat on the power of patient storytelling with special guest HealthSparq (@HealthSparq) to explore the accessibility of patients to attend healthcare conferences. Lisa Deck (@lbdeck) and Emily McIntosh (@mcintose) the winners of two patient scholarship also joined us. Their scholarship goes towards attending the The Patient Experience Symposium.

The #patientchat community came together and shared their best advice and tips.

Top Tweets and Advice


We Still Have A Long Way To Go


Importance of Inclusion


Less Swag, More Patients


Full Chat

 

Applying Patient Advocacy Initiatives to Your Patient Journey #patientchat Highlights

Last week, we hosted an Empowered #patientchat on applying patient advocacy initiatives to the patient journey with special guest Seth Rotberg (@Srotberg15). Seth is a rare disease advocate and motivational speaker who is passionate about bringing his personal experience to better support the health community. The #patientchat community came together and shared their best advice and tips.

Top Tweets and Advice

 

You Have Power

 

 

 

 

Be Confident

 

 

 

 

Patient Advocacy Has Benefits

 

 


Full Chat

 

Finding Your Voice #patientchat Highlights

Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Full Chat

Starting the Year Empowered #patientchat Highlights

On Friday, January 11th, we hosted an Empowered #patientchat on starting the new year off empowered. This time of year is a good time to reflect on the past year and set goals for the new year – including being empowered in your health.

Being an empowered patient can have many different definitions, but most include patients taking an active role in their health by furthering their education on disease and treatment options, participating in shared decision-making with healthcare professionals, and advocating for themselves to get the best care they deserve.

The Top Tweet Takeaways…

 

You Are the Expert of YOU

Inspire by Example

Organization is Key


Full Conversation

Introducing Our New Facebook Community: Empowered Patient Chat

We are excited to announce that our new Facebook group is now live, and waiting for you to join! This new online community builds on the success of our Empowered Patient Chat (#patientchat) tweetchat and aims to extend the discussion beyond Twitter and engage a larger population of patients and caregivers on Facebook.

Living with a disease or other chronic condition is challenging for patients, their families and friends. The Empowered #patientchat strives to engage and empower patients and caregivers by connecting them with each other, sharing resources and inspiration across conditions, and exploring important topics of interest to those in healthcare who want to elevate the patient voice in all healthcare matters. The community is guided by a belief in keeping the patient perspective at the forefront of all healthcare interactions, the strength of peer support, and the power of shared decision making in healthcare. 

Empowered Patient Chat (#patientchat) is a community of patients, caregivers, and healthcare professionals, interested in achieving their best health possible by discussing topics of interest in healthcare from a patient’s perspective. 

Topics of interest have included:

  • Including Patients and Care Partners: Let’s Talk Healthcare Conferences
  • Overcoming Disparity in Clinical Trials
  • Are We Missing the Mark with Patient Involvement
  • Understanding Medical Research
  • How Does Technology Benefit Patients
  • How to Include Patients in Design
  • What to Do When No One Will Listen
  • Caring for the Whole Person
  • Self-Care Goals
  • Managing Stress of Being a Patient
  • and more…

Join our group today

Tag Archive for: #patientchat

Empowered #patientchat – 2018 Self-Care Goals

Youre Invited! Join us for our first bi-weekly Empowered #patientchat of the year.

We know it’s difficult to make time for yourself, especially when you or a loved one is a patient. But self-care is so important as a way of managing your mental wellbeing. Whether you call them resolutions, goals, or intentions, let’s chat about how we can make self-care and wellness a priority in our daily, weekly, and monthly plans in 2018.

Guiding our discussion will be the following topic questions:

T1: “Self-care isn’t always bath bombs and $20 face masks…” What does self-care mean for you? #patientchat

T2: For 2018, what would you like to start doing/stop doing? How do self-care and wellness fit into your overall plans? #patientchat

T3: Think about a self-care goal(s) you reached in 2017. What helped you succeed? Tips? What can keep you from attaining your goals? #patientchat

T4: Why is it important for care partners to prioritize self-care? #patientchat

T5: How can you sustain your self-care routine when days aren’t routine? Example: Appointment days for you or loved ones? #patientchat

T6: How can we make self-care and wellness part of our daily, weekly and monthly plans? #patientchat

We hope to see you Friday, January 12th 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!

I'll be at the Empowered #patientchat on Fri 1/12 at 10amPT | 1pmET. Join me! Click To Tweet

No Empowered #patientchat – Happy Holidays

There will be no Empowered #patientchat today. See you next year!

Empowered #patientchat – A Year in Review: Looking Back on 2017 and Ahead to 2018

You’re Invited! We hope you’ll join us  as we round out 2017’s Empowered Patient Chats with a look back and a look ahead.

T1: What are some things you did in 2017 that made you feel more empowered? What steps have improved your overall quality of life?

T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2018?

T3: Which healthcare trends were important to you in 2017? What trends would you like to see gain momentum?

T4: What do you find most helpful about the #patientchat community? What would you like to see in 2018?

T5: How might we foster collaboration and empower more people in their health? Ideas to get more people involved?

T6: We want to hear from you! What topics are you passionate about and would like to hear more of in 2018?

 

We hope to see you Friday, December 15th 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!

I’ll be at the Empowered #patientchat on Fri 12/15 1pmET. Join me! Click To Tweet

Managing the Stress of Being a Patient – Empowered #patientchat

You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion on Managing the Stress of Being a Patient.

Stress, anxiety, pain and fear are unfortunately all very common emotions that are experienced by patients and their families. A chronic disease is often one of the most stressful experiences of a person’s life.  Stress and anxiety can be especially prevalent during this busy time of year.

Ongoing stress can be harmful to a patient’s health, so we wanted to highlight this topic and how we can work to manage stress.

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

T1: What is the most stressful part of being a patient for you?

T2: What do you do to cope with or reduce stress?

T3: How can HCPs help patients cope with stress and empower them?

T4: What do you think the role of diet, exercise, and maintaining a healthy lifestyle play into managing stress? And how can you keep it up during the holidays?

T5: Do you have any tips or tricks that have helped you manage the stress of the holiday season?

T6: How can patients handle all the questions they may get about their illness during the holidays from family and friends they don’t normally see?

We hope to see you Friday, December 1st 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!

I’ll be at the Empowered #patientchat on Fri 12/1 1pmET. Join me! Click To Tweet

What Empowered Patients Need To Know About Healthcare Access with @healthcareRC – Empowered #patientchat

You’re Invited! Join along with us as special guest Healthcare Rights Coalition, who is known on Twitter as @healthcareRC for the next Empowered #patientchat for a discussion on ACA Open Enrollment.

Everyone deserves affordable health insurance to achieve their best health, which is one of the reasons ACA was created This comprehensive health care reform law enacted in March 2010 (sometimes known as ACA, PPACA, or “Obamacare”).

The law has 3 primary goals:

  • Make affordable health insurance available to more people. The law provides consumers with subsidies (“premium tax credits”) that lower costs for households with incomes between 100% and 400% of the federal poverty level.
  • Expand the Medicaid program to cover all adults with income below 138% of the federal poverty level. (Not all states have expanded their Medicaid programs.)
  • Support innovative medical care delivery methods designed to lower the costs of health care generally.

You can enroll in or change 2018 Marketplace health insurance right now. The 2018 Open Enrollment Period runs from November 1, 2017 to December 15, 2017.

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

T1: First things first, why is it important for EVERYONE to have access to quality health care coverage?

T2: During this period of Open Enrollment, what are some things that people shopping for coverage need to know?

T3: As part of a “basic” health care plan that can be obtained through the Marketplace, what is covered?

T4: How can more people and organizations encourage uninsured people to ultimately get the coverage they need?

T5: Now let’s talk resources. What’s out there that everyone can use to help get coverage during Open Enrollment?

T6. Let’s share more resources. What Twitter accounts do you follow for information about health care coverage?

We hope to see you Friday, November 17th 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!

I’ll be at the Empowered #patientchat on Fri 11/17 1pmET. Join me! Click To Tweet

Empowered #patientchat – Chronic Disease and Shame

You’re Invited! We hope you’ll join us for our next Empowered #patientchat as we discuss shame.

Shame is that terrible, private feeling that something is wrong with us – that we are somehow defective as a person. These feelings of regret and responsibility can be triggered when you are diagnosed with a disease. Certain diseases can sometimes be stigmatized by others, but it does not matter why or how someone has a disease, all that matter is what happens moving forward. Shame can quite often prevent people from getting the care they need and deserve.

Video: Listening to shame | Brené Brown https://youtu.be/psN1DORYYV0

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

T1: What role does shame play in healthcare for patients?
T2: Has shame about your health ever prevented or delayed you seeking care or support?
T3: What are your experiences of disease and the issue of shame?
T4: Why do you think some patients feel shame more than others?
T5: How have you overcome feelings of shame or helped others overcome shame?
T6: How might we support more patients in overcoming shame around their health?
T7: How can we de-stigmatize diseases?

We hope to see you Friday, November 3rd 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!

I’ll be at the Empowered #patientchat on Fri 11/3 1pmET. Join me! Click To Tweet

Empowered #patientchat – Common Myths of Healthcare

You’re Invited! We hope you’ll join us for our next Empowered #patientchat as we discuss common healthcare myths.

Health care is a topic that inflames passions. Everyone has an opinion on how to fix or improve medical care. Unfortunately, we don’t always get the facts straight. Tune in to see if you know the truth behind these common health care myths.

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

T1: FACT or MYTH: Few health decisions are appropriate for Shared Decision-Making (SDM).

T2: FACT or MYTH: Technology is the center of healthcare transformation.

T3: FACT or MYTH: It takes years of education and training to deal with health issues.

T4: FACT or MYTH: Clinical Trials should only be considered as a last resort.

T5: What can we do to dispel some of these common myths?

We hope to see you Friday, October 20th 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!

I’ll be at the Empowered #patientchat on Fri 10/20 1pmET. Join me! Click To Tweet

Empowered #patientchat – How to Find a Doctor That Listens

You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion. We will be discussing how to find a doctor who listens to you.

The most common complaint about physicians on the internet is, “They didn’t listen to me”. So, how do you go about finding a doctor who listens, respects your participation as a patient or caregiver, and takes a proactive role in caring for your health or the health of a loved one? Let’s discuss this Friday, October 6th at 11am PST | 1pm EST.

 

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

T1:  What are your tips to make sure you get the best, personalized care every time you see a doctor?

T2: When you are ‘interviewing’ a potential doctor, what questions should you ask them?

T3: What resources do you use to prepare to ask your doctor questions regarding treatment options, genetic testing, etc.?

T4: Say you found out about a new treatment or trial and your doctor won’t discuss it with you. What should you do?

T5: Have you ever had to change doctors? If so, how do you do this?

T6: Who else can you go to, beside the doctor, to ask questions, seek information, or lean on?

 

Empowered #patientchat – How does an empowered patient approach prevention?

You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion. We will be discussing prevention and how an empowered patient approaches making healthy decisions.

Staying healthy and living a long life starts with preventive healthcare. Preventive healthcare can help you avoid illness and detect problems before you notice any symptoms – helping you stay healthy. This may include immunizations, vaccines, physical evaluations, lab work, x-rays and medically appropriate health screenings. Let’s chat about preventive care and why it can benefit everyone.

 

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

 

T1: Is prevention a misnomer? Should focus be on risk reduction?

T2: How do you identify your risks? Does knowing your risks help you make healthier choices?

T3: What are some challenges in getting regular screenings?

T4: Why do you think it often takes a serious illness before people take their health seriously?

T5: How do we keep this conversation going?

 

We hope to see you Friday, September 8th 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!

I’ll be at the Empowered #patientchat on Fri 9/8 1pmET. Join me! Click To Tweet

Empowered #patientchat – Health Records

Health Records and Taking Charge of Your Care 

You’re Invited! Join special guest Open Notes, @myopennotes, for our next Empowered #patientchat where we’ll discuss health records.

Access to health records is vital because it gives patients and care givers the ability to coordinate their health care better, prevent repeat and unnecessary tests or procedures, engage in shared decision making, and provide a greater control over their health and well-being. Even with more and more health records being made available to patients electronically, there are still challenges.

Let’s chat about health records, shared decision making, and why they can benefit patients.

  • An Electronic Health Records (EHR) is a digital version of a patient’s paper chart that can:
    • Contain a patient’s medical history, diagnoses, medications, treatment plans, immunization dates, allergies, radiology images, and lab and test results
    • Allow access to evidence-based tools that providers can use to make decisions about a patient’s care
  • Shared Decision Making (SDM) is a process in which clinicians and patients work together to make decisions and select tests, treatments and care plans based on clinical evidence that balances risks and expected outcomes with patient preferences and values.
  • Patient Portal is a secure online website that gives patients convenient 24-hour access to personal health information from anywhere with an Internet connection.

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

 

T1: What do you want your health care team to know about you and your health information?

T2: For those who are able to read their visit notes, what are the benefits?

T3: How does access  to notes help you actively share in your healthcare decision making?

T4: Do you ever find information in your notes that you find confusing or worrisome? What do you do about that?

T5: How can the notes be used in between visits to help manage care and keep you organized?

T6: Have you ever found an inaccuracy in your note? Is there a role for patients to play in the safety of care?

T7: What’s your advice for patients who might be a little scared to ask for their notes or bring up an inaccuracy?

 

We hope to see you Friday, August 4, 2017 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!

I’ll be at the Empowered #patientchat on Fri 8/4 1pmET. Join me! Click To Tweet

About OpenNotes

OpenNotes is an international, nonprofit movement advocating for a culture change in the way visit notes are managed. We’re committed to spreading the availability of open visit notes and studying the effects. We believe that providing ready access to notes can empower patients, families, and caregivers to feel more in control of their health care decisions, and improve the quality and safety of care.


Related Reading:

https://www.wsj.com/articles/how-to-get-patients-to-take-more-control-of-their-medical-decisions-1488164941

http://content.healthaffairs.org/content/32/2/285.full

http://www.medscape.com/viewarticle/882873

https://www.healthit.gov/sites/default/files/onc_records-request-research-report_2017-06-01.pdf

Empowered #patientchat – How to Communicate with Your Care Partner

How to Communicate with Your Care Partner

You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion about communication on July 7, 2017. Effective communication takes a lot of effort, and that is especially true when it comes to health matters. Whether you’re communicating with a professional nurse or a loved one, you’re bound to run into communication challenges. Some of the issues patients and care partners deal with include setting clear expectations, avoiding power struggles, and learning to communicate openly. The responsibility for good communication falls on both the patient and the care partner(s).

Let’s chat about communicating with our care partner(s) who help us navigate through health care.

  • A care partner is a person who cares from someone who is sick or disabled.
  • Communication is the process through which information is exchanged back and forth between individuals.

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

T1: What is the difference between a caregiver and a care partner?

T2: How can you lay the groundwork for effective communication with your care partner?

T3: How can patients overcome possible communication barriers with their care partners? And vice versa?

T4: What are some tips and resources to help patients better communicate with their care partner?

T5: What can care partners do if they need help?

 

We hope to see you Friday, July 7, 2017 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!

 

I’ll be at the Empowered #patientchat on Fri 7/7 1pmET. Join me! Click To Tweet

Empowered #patientchat – Finding Your Tribe

 

Finding Your Tribe

You’re Invited! Join special guest HealthSparq, @HealthSparq, for our next Empowered #patientchat where we’ll discuss health communities. Communities or tribes are a key component of patient advocacy and help many of us cope and grow during difficult times.

HealthSparq also invites you to join their free, one-day online and in-person What’s The Fix? (#WTFix) conference Wednesday, June 14th, 2017. Anyone with an interest in fixing health care is welcome to attend either virtually or in-person to gain an understanding of how a single person can drive change in health care, real tools to make positive changes, and inspiration to start your own change movement! You’ll hear from an amazing range of speakers including:

  • Dana Lewis who developed an artificial pancreas for Type 1 Diabetics and is a champion for the #openAPS and #WeAreNotWaiting campaigns
  • Morgan Gleason who used social media as a young teen to talk about patient empowerment and improving patient experiences
  • Fred Vogelstein and Evelyn Nussenbaum who treated their sons epilepsy with marijuana
  • A panel of moms – mom’s go above and beyond to learn everything they can to help treat and cure their kids
  • Tami Rich who has gone from industry professional to advocate to caregiver – and is now working to help change the industry

You’ll also connect with an amazing community of fellow attendees that will stay engaged into the future through continued events, a LinkedIn group, and Tweet chats! To continue the #WhatTheHealthCare movement beyond the conference, follow them on LinkedIn, Facebook, or Instagram.

 

Let’s chat about our communities, our people, our tribes, that help us navigate through health care.

  • A tribe is a group of people, or a community with similar values or interests
  • A health community provide a means for patients and their families to learn about an illness, seek and offer support, and connect with others in similar circumstances
  • Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and care partners.

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

T1: How do you define a “tribe”?

T2: How do you use your tribe to improve your health or the health of those you love?

T3: What health communities or tribes do you currently participate in?

T4: How did your tribe help you trust them? What is needed to build trust in a tribe?

T5: Are there certain situations where you tend to trust your tribe more than your doctor?

T6: What are some tips and resources to help patients who don’t have a tribe build one or find one?

 

We hope to see you Friday, June 9, 2017 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!

I’ll be at the Empowered #patientchat on Fri 6/9 1pmET. Join me! Click To Tweet

About HealthSparq

HealthSparq exists to help people make smarter health care choices. They achieve that every day by partnering with health plans to offer their members the most integrated tools possible and make sure they have everything they need to understand total cost and quality before making health care decisions.

Empowered #patientchat

You’re invited! Join us for the next Empowered #patientchat where we’ll be discussing those awkward conversations about your health. No one seems to know just what to say and things often spiral to strange places from there.

 

Earlier this year, Emily McDowell, creator of Empathy Cards, was interviewed on NPR about her book collaboration “There Is No Good Card For This: What To Say And Do When Life Is Scary, Awful, And Unfair To People You Love“. She states in that interview:

“Really, I think it’s all about listening. And I think a lot of what we go into in the book is that we operate under the assumption that we need to find the right words, and the good news is that Oprah can’t even do that. Nobody can do that. And so you kind of are off the hook in that really all you need to say is, “I’m here,” and “I’m thinking about you,” and “How are you doing today?” and then let the person talk. …”

Sounds simple but the pressure to be positive and the hurt that is caused by others’ comments is still something often covered by patient advocates – showing we still have a long way to go. Here’s a collection of thoughts on this topic:

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

T1: What are some of the things people have said to you about a disease/condition that really struck a cord?

T2: Why do you think these awkward conversations are so common? Why do we find it so hard to communicate about illness?

T3: What are some of the language traps surrounding illness? What terms do you hate to hear from others and the media?

T4: What things have people said to you that you found truly supportive and helpful?

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.

We hope to see you Friday, May 26th 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!

I’ll be at the Empowered #patientchat on Fri 5/26 1pmET. Join me! Click To Tweet

Advocacy and the Patient with @LAlupusLady – Empowered #patientchat

You’re Invited! Join along with us as special guest Amanda Greene, who is known on Twitter as @LAlupusLady, for the next Empowered #patientchat for a discussion on different types of advocates and advocacy in healthcare.

Empowered #patientchats are a project of Intake.me.
Lupus is a chronic, complex and prevalent autoimmune disease that affects more than 1.5 million Americans. Lupus is difficult to diagnose because its symptoms come and go, mimic those of other diseases, and there is no single laboratory test that can definitively identify the illness. Early detection and treatment is the key to a better health outcome and can usually lessen the progression and severity of the disease. May is Lupus Awareness Month and you can find more information and resources from the Lupus Research Alliance and also from the Lupus Foundation of America.

A health advocate, patient advocate and patient advocacy are different roles, yet when they work together they can and do impact patient wellness.

  • Patient advocacy is an area of specialization in health care concerned with advocacy for patients, survivors, and carers.
  • The patient advocate may be an individual or an organization, often, though not always, concerned with one specific group of disorders.
  • A health advocate is a family member, friend, trusted coworker, or a hired professional who can ask questions, write down information, and speak up for you so you can better understand your illness/condition and get the care and resources you need – giving you a peace of mind so you can focus on your recovery/wellness.

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

T1: What does advocacy in healthcare mean to you?
T2: What is a health advocate, patient advocate and patient advocacy? How are they different and how do they work together?
T3: How do you personally advocate for your own health? For the health of others? Do you work with advocacy groups?
T4: What skills and tools do you need to be an effective advocate for yourself or others in the healthcare system?
T5: How can someone get started with legislative or research advocacy? Whey can they learn more?
T6: What are some ways advocacy impacts healthcare? Why is health advocacy important?
I'll be at the Empowered #patientchat on Fri 5/26 1pmET. Join me! http://www.intake.me/event/empowered-patientchat-may-26th/ via @intakeme Click To Tweet

We hope to see you Friday, May 12th 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!

Can Digital Media Save Clinical Trials Tweetchat

As part of Clinical Trial Awareness Week, A Coalition for Clinical Trial Awareness (@CCTAwareness) and @patientchat will be hosting a tweetchat on May 2nd at 1:oo PM EST.

We will be participating and are inviting you to join us! #patientchat #CTAW2017

New to tweetchats? – Check out this guide we created.