2020 Guide to Patient Culture on Social Media

Patient culture will bloom wherever it’s planted. It started on message boards and trickled into Facebook Groups, it spread across twitter and broke through your Instagram feed, it wove it’s way through Reddit threads and has even erupted across TikTok.

Every platform has a purpose, a mission, a community shouting to be heard in 120 characters or less, in impassioned arguments in comment boxes and even through interpretive dances. Patients are the most pervasive species of influencers– not because they want the clout or the clicks– but because their very lives depend on the awareness they spread.

There is so much more that goes into the patient culture on social media than just support groups or complaining about symptoms. Culture can include inspiration, advice, calls to action on a legislative level, personal testimonies, the sharing of breaking news and research, the celebration of survivors and memorializing those who have passed. It can include the discussion and creation of guidelines for how an entire community of patients wants to be represented to the mainstream world. It can spur a collective sense of empowerment that leads patients to demand respect and communication in the exam room and maximum transparency at the pharmacy.

It can be a collection of stories that represents an entire group’s common experiences: the prejudices and injustices they face.

But every platform spins this narrative differently and it’s important to know where to look for the right information and to understand what it is you’re stumbling upon when you get there.

Let’s break down how the four top social media platforms represent patient cultures through their mediums and how you can be a collaborative part of these conversations.

Reddit, also known as the front page of the internet, is an American social news aggregation, web content rating, and discussion platform. Registered members submit links or original content to the site which are then voted up or voted down by other members.

How Do Patients Utilize It?

Reddit’s algorithm brings the best posts and comments to peak visibility for browsing users. So if a post has a lot of positive engagement, it’s pulled to the forefront of each subreddit. Sub-reddits are how each topic is divided — and the patient community has plenty!

From R/chronicillness for those with questions about coping with life with a chronic condition to R/tryingtoconcieve for those struggling with infertility to even R/AskDocs for patients looking to anonymously seek out medical advice — if it’s being discussed by patients, it’s being discussed on Reddit.

What puts Reddit at the top of the list for many patients seeking advice? The promise of total anonymity. There’s no need to set up a profile or give your full name. Users can sign up with just an email address and choose a username unrelated to their real identity. This allows for some of the most open and raw conversations possible.

The Most Popular Patient Content:

Reddit thrives on weird and fascinating, so while it certainly has a place for verified research articles and discussion on medical breakthroughs — the most hyped patient communities are ones with first-person narratives about specific problems that let users run wild with their responses. Patients peek in to get answers to their own questions, but also to explore threads about symptoms and conditions related to their own and that feed on their need to understand what might happen to them down the line, based on the experiences of similar patients.

Putting aside the politics and the excessive use of caps lock by the less than tech-savvy of its users, Facebook is still the number one platform for patient-to-patient advice in the question and answer format. It’s a place for advocacy, fundraising, advice, support, and journey updates.

How do Patients Utilize It?

Despite privacy concerns, the main use of Facebook for patients continues to be the access to private, hidden, and semi-public groups where patients can share advice, treatment reviews, and doctor recommendations by condition and complaint. In 2019, WEGO Health surveyed more than 400 patients and found that 98% still use Facebook, 94% are part of a health-related Facebook group, and only 3% have deleted their accounts because of privacy concerns.

It’s here that patients feel comfortable sharing a variety of personal and specific medical questions. It’s an ideal environment for seeking advice with easy back-and-forth from multiple viewpoints, where patients can demand source material for backup opinions and view indexed conversations.

It is not a productive space for patient leaders who want to build their brands. The most active patient users are the newly diagnosed and those with conditions they feel are too intimate to discuss openly on other platforms.

Facebook is also a useful place for patients to share fundraisers for medical care with plenty of easy to share features that allow for maximum visibility to friends, family and supporters who care.

The Most Popular Content:

Private support groups (or the newly designed health support groups) offer just enough privacy to allow users to share and connect in meaningful ways. There is no one condition area that thrives over another. Patients can find support for everything from cancer to rare genetic mutations to groups that specifically discuss one treatment

Instagram may very well be responsible for creating the idea that patients can be influencers in their own right. The social giant lets patients curate their journey as an expert through vivid photographs, blog-length captions, and quick thoughts.

How do Patients Utilize It?

This is the platform for patients to showcase their expertise and experience– micro-blogging on different topics from medication to life advice to coping skills. It’s a one-stop-shop for understanding the breadth of a patient’s following and engagement. If healthcare companies and sponsors want to understand who is the community’s social stakeholder, an Instagram profile serves as that patient’s calling card, resume, and collection of testimonials.

It’s most useful for giving one-way advice, versus the collaborative spirit of other platforms. You won’t struggle to find your tribe on Instagram with their hashtag system. You can also view who public accounts are following and their suggested follow feature is an advanced algorithm that won’t let you down if you’re looking for content creators that match your interests and location.

The Most Popular Content:

Instagram is broken down into two main parts: the grid and the stories.

Since Instagram implemented its stories feature in August 2016, the stalker functionality has been set ablaze on the platform. Patients and their communities love it because not only do they get to focus their feeds on advocacy for their conditions, but they also get to share how multi-dimensional their lives are outside of their conditions. This lends a more human element to their content and diluting the in-your-face awareness campaigns with personable, easy to follow content.

Patients seek out stories for authenticity — something that can be hard to generate in their feed posts. Feed posts are usually carefully planned and executed by all influencers — even patients. These posts make a statement without having to participate in community drama. They allow one-on-one feedback in the form of direct messaging and moderated comments. They help patient leaders share stories and advice over time, building a personal portfolio of their expertise and showcasing their opinions, experiences, and life lessons.

The new kid on the block is already 500 million users strong, and for patients of all kinds, it’s not just about crop tops and thirst traps. The patient community is (metaphorically) healthy and thriving on this music-based app. Despite the threat of a ban (now moot) and the public perception that this app is exclusively populated by 14-year-old girls, TikTok actually has fast-growing patient populations in everything from the deaf and hard-of-hearing scene to the cancer community to the rare disease content creators.

How do Patients Utilize It?

What do we do when we can’t cry about it? We laugh. We dance through it. We make dark jokes and we share information so we can step out of the loneliness and into a more aware world. That’s exactly the route patients are taking on TikTok to commiserate and educate. There’s no limit to the creativity of TikTok creators, and as you scroll through your auto-populated For You Page you’ll discover everything from patients sharing clips about their hardships with mental illness to teaching American Sign Language with voice-overs from Keeping up with the Kardashians.

Creators use popular trending sounds, editing techniques, and inside jokes to make their unique content about disease management relatable to other patients and to the general community. The addictive technology behind TikTok means that you can scroll indefinitely, always finding content that relates to the videos you previously enjoyed watching.

The Most Popular Content:

The wonder of TikTok means that popularity is subjective. Based on your interest (and in a patient’s case– their diagnosis) you’ll be directed to content that best fits your viewing needs. Is it slightly creepy? Yes. Is it effective? Absolutely. If you like a video about an obscure rare diagnosis, you’ll be redirected to twenty more clips about that diagnosis. Careful what you allow to play in its entirety or you could find yourself in a black hole of content you hadn’t anticipated engaging in.

As for the trends in the patient community, there are plenty. But patients often use the app’s evolving dances, sound clips, and transitions to tell personal stories, share facts about their unique conditions, or make relatable comedy out of what can seem impossible to open dialogue about on other platforms.

With everything that’s happening on social media right now, it’s easy to forget that it can be a lifeline for some patients who rely on it for support, comfort, and camaraderie during a health crisis. It’s also a place for creativity to thrive and for awareness and compassion to gain new footing.

Which platforms do you think will be the center for patient culture in 2021?

Home Workout Routines To Stay Fit And Active During The Coronavirus Lockdown

If you’re here reading this article right now, you too have been running out of ideas to keep yourself motivated to workout in this crucial time, right? We ain’t a psychic but we can guess that being at home all cooped up is taking a serious toll on your physical and mental health, everything has come to a halt from partying with friends to leading a life that was called normal a couple of months ago. You are not alone on this abyss. Though you have no access to gyms or parks, look around and be creative with your workout during this lockdown. And today we are going to tell you exactly the same, how you can blow the dust off your body (that was too much of an exaggeration) and get ready to start an active day in this ‘new normal’ during coronavirus lockdown.

As easy as it sounds, being active and staying fit in quarantine might demand more motivation and consistency compared to your normal days. You must be thinking why? Because when you’re stuck at the comfort of your home, the comfort starts getting way more absorbing than your willingness to be physically active.

We are going to list down a few home workout routines that will help you to be active, stay fit and stick to your fitness goals. You don’t want to come out of quarantine with unwanted gains, right? We certainly don’t!

FULL BODY WORKOUT 

Jumping Jacks x 20

It’s a great cardio exercise that stimulates your heart muscles while effectively on your shoulder, abdominal, glutes and quadriceps. Fact: You can burn 100 calories by doing 500 jumping jacks in a day!

Push-ups x 15

Push-ups help to build your upper body strength while engaging your abdominal muscles and lower back muscles. It also improves your body posture.

Burpees x 15

Burpees are a total win for a full-body workout, it pumps up your heart and stimulates movement of every muscle in your body. It also helps you to burn a lot of calories.

Squats x 20

Squats are popular as a leg toning workout but along with your butt and hamstrings, it also works on your abdominal muscles and lower back muscles.

LOWER BODY WORKOUT

Glute Bridge x 15

Sitting and working from home might make you feel like a sloth mentally and physically. This workout will work wonders for your hip stability and strengthens your lower back muscles. It also helps to strengthen your glutes, hamstring and abdominal muscles.

Jumping Squats x 15

Apart from burning excess calories and fats, jumping squats helps to strengthen your entire lower body along with your core and quadriceps.

Lunges x 15

Lunges are great for improving mobility and strengthening your lower body, core, spine, and quadriceps.

Pistol Squats x 10

Pistol squats are an advanced level of squats that puts intense tension on your core and lower body which helps to maintain mobility, balance, and flexibility. If these are too much for you, try doing 3-4 and you will get a hang of it till this chaos ends.

UPPER BODY WORKOUT

Push-ups x 10

The most popular exercise to build upper body strength while stimulating various muscles from the core to the back muscles, you must focus on doing this in proper posture. 

Shoulder Taps x 20

Shoulder taps are really efficient if you’re aiming at defining your abs. It also helps to strengthen glutes, arms, shoulders, and core. 

Decline Push-ups x 10

This exercise focuses on building pectoral muscles and upper chest muscles, along with targeting your triceps, core and deltoid muscles. 

Triceps Dips x 20

A very simple yet effective exercise to active your tricep muscles – the triceps dips help to strengthen your shoulder and arms. 

CORE WORKOUT 

Crunches x 20

A very popular exercise for abdominal muscles crunches also helps to strengthen your obliques and lower back muscles. 

Bicycle Crunches x 20

The bicycle crunch is a great exercise to strengthen your core muscles, activating obliques and burning loads of calories. 

Boat Hold For 60 Seconds

This is the simplest looking exercise which is pretty deceiving. It works on various muscles and helps to strengthen your lower back, abdominal muscles and spine. It also stimulates your kidney and intestine. 

Flutter kicks x 20

This exercise is great for abs sculpting, reducing fats, toning your lower body and improving the overall endurance of the body. 

You can do 3 to 4 sets of the above mentioned sets as per your body capacity but we suggest you keep challenging your body by practicing it every day and increasing one more round. Do this workout at home this quarantine, you can record yourself while doing these workouts and tag @gympik on Instagram for a feature on our page. Let’s aspire to inspire! 

 

The post Home Workout Routines To Stay Fit And Active During The Coronavirus Lockdown appeared first on Gympik Blog.

Top 10 | Best in Show: Instagram

The 2019 WEGO Health Awards turned out to be our biggest celebration yet! With over 6k nominations and 130k endorsements, we were able to celebrate more Patient Leaders than ever before.

The program celebrates the top 5 finalists in each of the 15 WEGO Health Awards categories, but with so many nominations, it’s nearly impossible to shine a bright light on all these deserving nominees! In hopes of recognizing even more nominees, we’ve compiled the Top 10 Patient Leaders in each category based on community endorsements.

WEGO Health Awards Best in Show: Instagram Award

These Top 10 Instagram Patient Leaders are leveraging the media sharing platform to raise awareness for their condition area. Through pictures, videos, and stories, these leaders are cultivating a community of support, transparency, and encouragement. For anyone looking to bring their advocacy to Instagram, these are the ones to watch for strategy, inspiration & engagement tactics!


@health_anxiety (Taylor Marae) | Mental Health Patient Leader

2019 Best in Show: Instagram Winner

Taylor Marae, registered dietitian in integrative and functional medicine, owner of the instagram account @health_anxiety and creator of @anxietytoolkit / anxietytoolkit.org. After going to extreme panic disorder, health anxiety, depression and agoraphobia, Taylor found her way to recovery and made it her life goal to help others struggling with mental health issues feel less alone. During her worst anxiety days she felt so alone like no one understood, she made it her goal to never let someone else feel that way. Today, she freely speaks about her advocacy for mental health and has shaped her career around mental health. Now, gaining over 84,000 followers she is helping so many people feel less alone. Since, she has opened up Anxiety Toolkit which provides people with boxes full of anxiety fighting products to help find peace during your peak of panic.

Get to know the WEGO Health Awards winner and follow her on social.


@CarissaBarzee (Carissa Barzee) | Infertility Patient Leader

2019 Best in Show: Instagram Finalist

“My husband and I have been going through infertility for almost 5 years and we have shared it on social media for over 2 years. We have done multiple fertility treatments (meds & ti, IUI, and IVF). We have also experienced the heartbreak of child loss twice. Our biggest goal is to help others feel less alone, educate in the best way we can, while also sharing that you can still find joy in the journey. We are sooo grateful to have a platform and to be a voice for others.”

Want to get to know Carissa? Click here.


@TheCancerPatient | Cancer Patient Leader

2019 Best in Show: Instagram Finalist

This account offers a satirical look at life as a cancer patient. It’s relatable and funny memes bring much needed laughter to the challenges of a cancer patient journey.

Add @TheCancerPatient to your feeds.


Dr. Christina Iglesia | Mental Health Patient Leader

2019 Best in Show: Instagram Finalist

On October 10th, 2018 (World Mental Health Day), Dr. Christina Iglesia launched the #therapyiscool mental health action campaign. Dr. Iglesia launched this initiative after several patients disclosed how they don’t disclose the fact that they participate in therapy, even to the closest people in their lives. Statements shared, like “My parents don’t believe in therapy” or “People would think I am crazy or something” continued to make their way into the therapy room. The theme of these conversations kept coming back to stigma, this implicit agreement that mental health issues are not to be talked about. It became clear to Dr. Iglesia that people will continue to suffer in silence until we make it socially acceptable to partake in mental health treatment, such as therapy. It is with this in mind that Dr. Iglesia created the #therapyiscool mental health action campaign, with the intent to encourage authentic and open conversations about mental health.

Find out more about Dr. Iglesia’s mission and add her to your feed.


@cinnamillie_ | Eating Disorder Patient Leader

2019 Best in Show: Instagram Finalist

After being diagnosed with the most deadly psychiatric condition (Anorexia Nervosa) at the age of 15, Millie went against all odds to become the inspiring young woman she is today. Born and raised in a little South Yorkshire town in England, Millie personifies the “she may be but little, but she is fierce” quote by Shakespeare. Since creating her Instagram account to go in-depth about her mental health struggles, Millie has amassed over 11.5K followers, as well as finding love through her account too. Millie explains the ins-and-outs of having anorexia, whilst also going into the nitty-gritty areas which are too “taboo” in society, such as the physical effects of eating disorders, the hardships that arise from weight restoration and the suicidal ideation; but, Millie manages to twist this into a positive, encouraging her followers to fight against the cruelty of eating disorders, revealing what her life is like with the illness (mostly) not in her life anymore.

Add Millie’s motivational voice to your feed.


Natalie Kelley – @plentyandwellwithnat | Ulcerative Colitis Patient Leader

“There were moments in that hospital bed I thought I would never be where I am at today – running my own business, helping other women with IBD and connecting with the most AMAZING IBD community on Instagram. But most importantly, I’ve learned that an autoimmune disease doesn’t make it harder to reach my dreams, it adds TO my dreams because without ulcerative colitis I wouldn’t have found my passions, I wouldn’t be a holistic health coach, I wouldn’t have the amazing community that I now have and I wouldn’t be able to change other IBD patients’ lives, and that is truly priceless.”

Want to learn more about Natalie? Click here to follow her.


Arafa Salim Said | Sickle Cell Disease Patient Leader

Arafa’s biggest advocacy aim is to move toward a sickle cell-free Africa in future generations. In the meantime, she promotes healthier, stronger, and more supported living with sickle cell disease. Specific objectives include country-wide pre-marital sickle cell testing, promoting literacy for young people with sickle cell, and increasing the standards of sickle cell care. Through instagram, twitter, facebook, youtube, and other social media platforms, she is able to build a large digital community that can work together toward these aims. Her digital media advocacy also offers inspiration, education, and advice for Tanzanians living with sickle cell disease. Her hope is that her efforts will lead to a brighter future for the next generation of Tanzanians.

Check out Arafa’s important advocacy work. 


Megan King @thetravelinghaloofhope | Ehlers Danlos Syndrome Patient Leader

“Becoming an advocate for EDS happened by chance. My journey began in Sept. 05′ at 16. I can’t believe 1 decision changed the trajectory of my life forever. I’ve endured 35 surgeries due to EDS with the next 1 scheduled for Sept. 19′. Due to limited resources I wrote about my journey in the hopes to connect with others. I want to be a small part of the solution for EDS treatments. It’s classified as rare but it really isn’t. No two cases of EDS are the same. This can make diagnosis difficult because there’s no “face” to EDS. We are all unique individuals with our own unique presentation of symptoms. As I wrote, to my surprise, people responded to what I was sharing.”

Follow Megan and see the important work she’s doing.


Rachel Straining – @thenoglutengirl | Crohn’s Disease Patient Leader

“When I was first diagnosed, even though I knew it wasn’t true, I just felt like the only person in the world who had this disease. I didn’t realize that there were other people out there who were fighting battles so similar to one that was waging war within my own life. ⁣One day, I made the random decision to make an Instagram account to find some gluten-free food inspiration. That day, I also found myself searching the hashtag “Crohn’s Disease.” That day, I realized that, all along, I had never really been alone.”

Add Rachel to your feed and stay updated about her advocacy.


Lucy Johnbosco | Diabetes Patient Leader

“I have been using my Diabetes experience as a Type One diabetes patient to motivate and inspire others who have lost hope.”

Inspired by Lucy’s mission? Add her to your feed.


Don’t forget to follow these Top 10 advocacy accounts on Instagram for more inspiration!