2020 Guide to Patient Culture on Social Media

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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: Unique Conversations with Total Anonymity

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.

Facebook: Patient to Patient Advice, Maximum Fundraising Potential

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: Follow the Leader

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.

TikTok: Commiseration and the Next Generation

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?

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