Health Leaders wear many hats. Some lead support groups, some advocate for their loved ones at the doctor’s office, some work with legislatures to expand healthcare coverage, and more. In this session, the options and opportunities that are available to Health Leaders as they move through their advocacy journeys are covered. Watch below.

Key takeaways:

• Health Leadership can be defined as any action that speaks in favor of, recommends, argues for a cause, supports or defends, or pleads on behalf of others.
• There are 4 main types of advocacy: community awareness and education, legislative, digital creator, and healthcare collaborator.
• To get started doing community awareness and education, Raquel recommends becoming an expert in your condition and learn about how the healthcare system affects other patients.
• To get started in legislative advocacy, begin strategically using free social media platforms to get the word out.
• To get started as a digital creator, get started on 1-2 types of social media and think about what gap you can fill in the community space. Ask yourself-what are people looking for that you have experience in?
• To become a healthcare collaborator, attend relevant conferences, stay up-to-date on research, and engage with patient communities and nonprofits.

About the speakers:

• Laura Kompanik is the Director of the Social Health Network at Health Union.
• Racquel H. Dozier is a Lupus Advocate & Educator. She was diagnosed with Systemic Lupus Erythematosus in 2004. Once diagnosed, Racquel realized that there was little to no support or access to information about lupus. Racquel understood she could help lupus warriors and educate others about lupus and formed Lupus In Color, an international support, education and advocacy group. A former social worker, teacher and counselor, Racquel is currently an author, entrepreneur and true advocate for the lupus community.
• Elle Cole empowers moms and advocates for children with sickle cell disease. She is a mom of twin daughters, one of whom is living with sickle cell disease and type 1 diabetes. In 2020 she was awarded the Advocating for Another WEGO Health award. She is the author of several books, including A Sickle Cell Coloring Book for Kids, ABCs of Sickle Cell, and The Ultimate Sickle Cell Activity Book.
• Rachel Hill is the highly ranked and multi-award winning thyroid patient advocate, writer, speaker and author behind The Invisible Hypothyroidism. Her books are bestselling and adored the world over by the thyroid patient community. Renowned for sharing her personal experiences and knowledge in an honest and authentic way, Rachel’s thyroid advocacy work includes authoring books, writing website articles, appearing on radio, television and podcasts, as well creating as her popular email newsletters. She has also been a board member for The American College of Thyroidology, and a council member for SocialHealthNetwork.com.
• Erica Carrasco is a migraine blogger from Midland, Texas, now living in Fayetteville, North Carolina. She helps her husband, Stephen, raise their two teens, Marissa and Noah, through a life with chronic pain and neurological symptoms. Their daughter, who also lives with migraine disease, is a junior in high school learning how to thrive with Erica at her side. Erica lost three jobs in this career field because of migraine and now is learning how to let go and find a new purpose through migraine advocacy. Erica is a Speak Your Migraine Network advocate and shines a light on a life with migraine with her husband by traveling across the United States telling their story. Together they discuss what their family life is like and how important advocacy is to the migraine community.

The post Connexion Replay: A Look At Health Leadership appeared first on Social Health Network.

The Health Union Patient Leader Certification Program offers a comprehensive toolkit for Patient Leaders seeking to elevate their impact in the healthcare space. During the Connexion Conference in 2023, Julie Croner shares the launch of the first Patient Leader Certification program of its kind.

Moving through 3 main competencies – Powerful Storytelling, Meaningful Engagement and Responsible Patient Leadership – Patient Leaders deepen their knowledge, hone their advocacy skills, adopt community engagement best practices, master digital outreach, and foster personal growth. Learn more by watching the video below.

Key takeaways:

• Patient Leaders who participate in the Health Union Patient Leader Certification Program gain access to a wealth of information and resources to effectively lay the foundation to advocate for your condition.
• The certification program equips participants with essential advocacy skills, including communication, public speaking, and building strategic partnerships.
• The Health Union Patient Leader Certification Program emphasizes community engagement strategies that facilitate meaningful interactions and discussions.
• The certification program provides insights into leveraging social media, blogs, podcasts, and other digital channels effectively.
• Patient Leaders gain confidence in their abilities, find validation for their unique experiences, and build a strong sense of purpose.

About the speaker:

Julie Croner is the Vice President of Community Development for Health Union. She’s worked for numerous online publications like HealthCentral, Everyday Health, and WebMD, been a Psocial Blogger & Mentor for The National Psoriasis Foundation, an Ambassador for the Arthritis Foundation and dabbles in a million other things as well. She loves traveling and speaking at conferences (like Stanford Medx, ePharma, ePatient Connections, and many others) and is passionate about connecting with other patients and patient advocates.

Take the Patient Leader Certification Program today.

The post Replay: Connexion Patient Leader Certification Launch appeared first on Social Health Network.

Healthcare advocacy as a Health Leader is deeply meaningful work–it can also quickly lead to burnout. Crafting effective health advocacy strategies requires not only your expert knowledge as a patient, but also a commitment to making a meaningful impact on the lives of individuals and communities through purposeful advocacy efforts. In this Connexion session, Carolyn Rotella, Health Union’s Director of Training and Education, walks Health Leaders through strategies for effective and sustained advocacy.

Key takeaways:

• There are 3 elements of advocacy crafting: task crafting, relationship crafting, and cognitive crafting.
• Learning about what energizes you versus what drains you can be a helpful first step. Carolyn suggests being curious about your work and asking yourself: What can you do more or less of, or what can you do differently?
• Creating goals can be helpful using the S.M.A.R.T. method. This stands for goals that are Specific, Measurable, Achievable, Relevant, and Timely.
• Writing your goals down is a helpful way to keep track of them and get started.

About the speaker:

Carolyn Rotella is the Director of Training and Education at Health Union. She began her career as a 4th grade teacher and quickly realized her love for teaching was fueled by an interest in adult learning. She made the transition to the field of training and development, and spent 10 years in the training department at Tiffany & Co. While focused on building training programs designed to meet business goals, she was able to incorporate the invaluable aspects of the coaching and development of employees. With an eye toward helping others understand themselves, their strengths, and how they learn best, she was able to successfully make the link between training programs and individual performance growth. During her time at Tiffany & Co. she earned her Masters in Adult Education from Fordham University. She took a hiatus from her role as a trainer to help her husband open and run his own small dental practice. In this capacity, she uncovered a love for patient care, education and advocacy.

Join the Social Health Network today!

The post Replay: Connexion Advocacy Crafting Session With Carolyn Rotella appeared first on Social Health Network.

Health Union hosted their 7th annual Connexion conference for Health Leaders on July 25th and 26th, 2023. Health Leaders from around the world joined virtually and connected, engaged, and learned from each other. The conference began with a welcome from Health Union’s Executive Team. See what they had to say in the video below.

Key takeaways

• Patient Leaders (sometimes called Patient Influencers) are unique health education agents. They can act as educators and bridge gaps between patients and an often overwhelming healthcare system.
• Health Union’s goal is to amplify the voices of Patient Leaders from across the world. Our goal is to empower Health Leaders through the Social Health Network and beyond. The Social Health Network provides Health Leaders with connection opportunities, resources, learning courses, and more.
• Our team has developed the Patient Leader Certification, the first of its kind! This Certification will establish Patient Leader credibility through education and third-party validation. It focuses on story-telling, engagement, and responsible leadership. This program will train the next generation of responsible Patient Leaders and help them positively impact conversations and patient engagement in healthcare.

About the speakers

Olivier Chateau is the Co-Founder and CEO of Health Union. Lauren Lawhon is the President and Chief Operating Officer of Health Union. Learn more about our Executive Team here.

Want to learn more?

Join the Social Health Network today!

The post Replay: Connexion Opening Session With Health Union’s Executive Team appeared first on Social Health Network.

In the realm of healthcare advocacy and patient empowerment, the role of Patient Leaders has gained significant importance. Patient Leaders play a crucial role in advocating for the needs and concerns of their respective communities.

To enhance their skills, expand their knowledge, and amplify their impact, many Patient Leaders are looking for specialized programs to gain a stamp of credibility in the landscape.

The Health Union Patient Leader Certification Program was designed precisely for this purpose. This program offers valuable insights and training, making it an essential resource for those aiming to make a lasting difference in the lives of patients and caregivers.

Here are five reasons why a Patient Leader should consider enrolling in the Health Union Patient Leader Certification Program:

Deepening knowledge and expertise

The health leadership landscape is dynamic and ever-evolving. Patient Leaders who participate in the Health Union Patient Leader Certification Program gain access to a wealth of information and resources to effectively lay the foundation to advocate for your condition. This content empowers Leaders to hone in their messaging, tap into best practices when it comes to engaging with the community, and to stay abreast on the most up-to-date rules and regulations that impact their work. Armed with this knowledge, Patient Leaders can provide more accurate and comprehensive guidance to their communities, establishing themselves as reliable sources of information.

Strengthening advocacy skills

Effective advocacy is the cornerstone of Patient Leadership. The certification program equips participants with essential advocacy skills, including communication, public speaking, and building strategic partnerships. Learning how to articulate a community’s needs, convey stories compellingly, and collaborate with healthcare professionals and policymakers enhances the influence and impact of Patient Leaders. These skills enable leaders to drive positive change and secure better outcomes for their communities.

Fostering community engagement

Patient Leaders often serve as the bridges that connect patients, caregivers, and healthcare providers. The Health Union Patient Leader Certification Program emphasizes community engagement strategies that facilitate meaningful interactions and discussions. By honing skills in facilitating support groups, moderating online forums, and hosting community events, Patient Leaders can create safe spaces for patients to share their experiences, seek advice, and find solace in a supportive community.

Navigating digital outreach

In today’s digital age, online platforms are pivotal for disseminating information and connecting with diverse audiences. The certification program provides insights into leveraging social media, blogs, podcasts, and other digital channels effectively. Patient Leaders learn how to craft compelling content, navigate privacy and ethical considerations, and engage with followers thoughtfully. This understanding of digital outreach expands the reach of their advocacy efforts and maximizes their influence.

Recognizing personal growth

Beyond the tangible skills gained, the Health Union Patient Leader Certification Program offers a platform for personal growth and self-discovery. Patient Leaders gain confidence in their abilities, find validation for their unique experiences, and build a strong sense of purpose. The program encourages self-reflection, resilience, and empathy – qualities instrumental in forming deeper connections within the patient community and fostering lasting change.

Become certified today!

The Health Union Patient Leader Certification Program offers a comprehensive toolkit for Patient Leaders seeking to elevate their impact in the healthcare space. Moving through 3 main competencies – Powerful Storytelling, Meaningful Engagement and Responsible Patient Leadership – Patient Leaders deepen their knowledge, hone their advocacy skills, adopt community engagement best practices, master digital outreach, and foster personal growth.

Patient Leaders can truly make a difference in the lives of patients and caregivers by effectively advocating for their communities. By enrolling in this program, Patient Leaders embark on a transformative journey that empowers them to advocate more effectively and contribute significantly to improving healthcare for all.

The post 5 Reasons to Consider the Health Union Patient Leader Certification Program appeared first on Social Health Network.

After the initial shock of a chronic or terminal illness diagnosis, questions arise. What does this mean? How do I manage the symptoms? Can I afford my treatments and appointments? It feels overwhelming. Learning to advocate for yourself is vital. Self-advocacy ensures you get the answers and care you need.

Preparing for doctor visits

Advocating for yourself means preparing ahead of time for your appointments. Plan ahead to make the best use of your time with the doctor.^1-3

• Write down specific questions – terms you do not understand, treatments you are curious about, or anything you want to discuss!
• List any symptoms you want to go over.
• Ask a loved one for input. They see things you do not.
• Recruit a loved one to attend the appointment with you. Having multiple ears to listen and recording details are helpful.

Attending doctor visits

Go to your appointment prepared to speak up! When facing the lab coat or diplomas on the wall, it can feel intimidating. Always remember you are the expert at living in your body. No one else knows what it feels like. Your doctor cannot address your concerns or symptoms if you do not speak up. The doctor’s office is often where self-advocacy begins.^1-3

• Ask your questions.
• Have the doctor repeat something if you miss it or need help understanding.
• Be clear on how to reach your doctor if you have questions before the next appointment.
• Request your visit summary to go over again later.
• Confirm any tests, lab work, prescriptions, and follow-ups you need before leaving.

A second opinion

Sometimes your first doctor or specialist is not the right match for you. No one doctor is the best fit for each person. You always have the right to look for a new doctor if you are unhappy. It may be time for a second opinion if your doctor:^1,2

• Does not listen to your concerns.
• Is unresponsive to messages.
• Employs medical gaslighting.
• Is not helping you achieve the best quality of life possible.

To find a new doctor:

• Ask others in your area who navigate the same chronic illness for recommendations.
• Check doctor reviews online.
• Ask different clinics about new patient wait times.

Long waits for an initial appointment can be frustrating. They may also indicate a good provider!

Advocating with insurance companies

Navigating insurance with chronic illness is challenging. Being uninsured or underinsured creates barriers to care. It adds stress for how to afford treatments. Treatment and procedure denials occur even with insurance. Insurance advocacy takes time and patience.¹

• Understand your policy. Know your copays for doctor visits, lab work, and drugs.
• Be sure your doctor and any specialists are in your insurance network.
• Before agreeing to a new drug, check insurance coverage. If your plan does not cover the drug, see if there are similar alternatives.
• If insurance denies a drug you need, work with your doctor to file an appeal.
• Contact the pharmaceutical company to see if they offer assistance.

Advocating at work

Your chronic illness can take up a lot of time. Multiple appointments, tests, lab visits, and the exhaustion your body experiences add up. Chronic illness flares can mean more days calling out of work. Advocating for yourself requires you first to identify your needs:^1,2

• Do you need workplace accommodations?
• Can you secure the Family and Medical Leave Act (FMLA) to protect your job if you run out of sick time?
• Will certain symptoms (brain fog, fatigue) make tasks dangerous?
• Can you work remotely a few days a week?

Then decide who you should inform and how much you want to share. How much you share may depend on what you need to request. You may choose to discuss your diagnosis with the following:

• Your supervisor
• Human Resources
• A few trusted colleagues

Every situation is unique. Only you can decide what is appropriate for you.

Applying for disability

In the journey with chronic illness, sometimes it becomes necessary to leave the workforce. Applying for social security disability benefits can fill some wage-loss gaps. It is often a lengthy process. You must gather medical records, secure doctor support, fill out paperwork, and plan for an appeal. Regularly follow up with your disability officer. Make sure the process is moving forward.¹

Self-advocacy comes into play in many ways with chronic illness. Gaining confidence in one area transforms your ability to always advocate for yourself.

References:

1. Self-Advocacy. Lyme Wellness Initiative. Available at https://lyme.health.harvard.edu/self-advocacy/#navigating-the-health-care-system. Accessed 6/12/2023.
2. Taking Charge of My Health Care Toolkit. Oregon Office on Disability and Health. Available at https://www.ohsu.edu/oregon-office-on-disability-and-health/taking-charge-my-health-care-toolkit#section-1257571. Accessed 6/12/2023.
3. Hagan T, Rosenzweig M, Zorn K, van Londen GJ, Donovan H. Perspectives on self-advocacy: Comparing perceived uses, benefits, and drawbacks among survivors and providers. Oncology Nursing Forum. 2017;44(1):52-59. doi:10.1188/17.onf.52-59.

The post A How-To Guide for Self-Advocacy appeared first on Social Health Network.

Editor’s note: This article was written by Patient Leader Lisa Marie Basile, who writes and moderates on AxialSpondyloarthritis.net. You can see Lisa’s Social Health Network profile here, and read more of her articles on AxialSpondyloarthritis.net here.

You can learn more about Health Union’s Patient Leadership Council here. Applications for 2024 will open in October 2023!

My time on the PLC

Founded in 2020, the Patient Leadership Council (PLC) is a select group of Health Union Patient Leaders and Social Health Award winners who give feedback on Health Union projects. PLC members offer valuable feedback on various Health Union initiatives, and they are a key part of ensuring that our efforts remain community-centered, inclusive, useful, and accessible.

PLC members represent diverse voices across our communities. Here, former PLC member Lisa Marie Basile shares details about her rewarding experience serving on the council. Lisa is a Patient Leader living with ankylosing spondylitis who served on the PCL from 2020 through 2022.

It’s been a few years since I joined Health Union. To be completely honest, I didn’t really realize how much writing about and directly engaging with our chronic and terminal illness communities would change my life.

I was already working as a journalist, and I’d written about health in general quite a bit. I felt comfortable sharing my experience, but it was always to a general audience. Writing for a direct audience of people with ankylosing spondylitis (AS) or axial spondylitis (AxSpA), though? Not as much.

This was a chance to share my experience in all its nitty gritty, to learn from others, and — above all — to support others through moderation in our communities. It’s more than writing. It’s connecting.

When I applied to be part of the Patient Leadership Council in 2020, I remember how excited I was get to the interview and land the role (which lasted for 2 years during COVID-19).

I felt very driven to provide feedback to such a groundbreaking organization as Health Union

There are other websites that provide community platforms, excellent editorial, and patient perspectives – but not in the caring, inclusive, unique, truly supportive way Health Union does. And it excited me to be able to give feedback to the company on how to leverage Patient Leaders – it was a way to peer behind the proverbial curtain.

I think it’s critical to not only include actual Patient Leaders as a foundational layer to your business model, but to actually use their feedback and ideas. If you run a business that showcases the voices and stories of people living with chronic or terminal conditions, their critique or inclusion is ideation is key.

Making an impact

During my time on the PLC, we chatted about how the WEGO Health team became part of Health Union, and became the Social Health Network (SHN). We also discussed the company’s goals and directions, especially around the SHN, which was incredibly exciting. The SHN is designed as a “network of patients, caregivers, and healthcare professionals with the goal of bringing empathy, support, and humanity to healthcare through the power of social health.”

As a Patient Leader myself, I appreciate the SHN’s offering of a community, paid opportunities, and training sessions for Patient Leaders. And it was great to see discussions and ideas circulating around the formation of the SHN.

In the end, I never set out to turn my AS experience into a work experience or even a community experience. I was even nominated for several awards, leading to being a finalist in a few Social Health Award categories.

Honestly, I thought it’d be me and my disease – this dark, constant, unpredictable thing—alone, getting through each day or each flare. But instead, AS has allowed me to meet people, learn things about community and outreach and the power of platform, and gain not only writing but feedback and engagement skills.

I’m grateful to be here, and to make an impact in whatever way I can. Here’s to the next round of PLC members!

The post My Experience on the Patient Leadership Council appeared first on Social Health Network.

Through the Social Health Network, you’ll be able to learn a lot about branding yourself as a professional Health Leader. We want you to have endless opportunities to play your part. We’re not going to limit you, and we hope you won’t feel the need to limit yourself.

Think big

As a Health Leader, you should be thinking broadly about the buckets you fit into.

Nearly all of our platform challenges have questions for you to answer about how best to describe yourself. When it comes to representing yourself as a Health Leader, you may think you fall into just one bucket – your condition-specific one. But in the industry, you might find that you fill several buckets.

You’re more than a condition

Yes, you might be a person with a rare cancer, but that means you’re a person with a rare disease as well as a person with cancer. You might also be a person who fits into a certain age demographic we look for, like people ages 18 to 35 or over age 55. We might be looking for people who are able to represent the female perspective, the male perspective, or the non-binary or trans perspective. We may be looking for a BIPOC perspective or a Health Leader who speaks different languages.

Consider your expertise

Your experience is also relevant to potential opportunities. Maybe you’re what we call a “fresh face,” meaning you’re a caregiver or someone living with a health condition who hasn’t worked with another pharmaceutical company before. Or you may be what we refer to as a “veteran” Health Leader, meaning someone who has worked on multiple campaigns, done speaking engagements, or participated in other opportunities over the years.

Don’t worry about audience size

We may be looking for someone with a small social following or a massive one. We may be looking for someone who lives in a small town or a big city with different types of access to different types of medical care. The point being, it’s good to think outside of your condition when it comes to being a Health Header. You may fill more buckets than you could imagine having opportunities for! When it comes to opportunities within the Social Health Network, we will continue to have diverse criteria.

Challenge yourself

As you figure out your buckets, you can visit the platform and continue learning new skills we offer, like public speaking resources and how to advocate on different social platforms. We’re here to support your growth and help you find opportunities that showcase just how valuable and unique you are in the Health Leader ecosphere.

Get started: Complete this challenge for points!

The post What’s The Secret to Landing a Social Media Campaign? appeared first on Social Health Network.

Choosing to become an advocate means sharing a health journey. To educate others, advocates share personal details about their health. They become vulnerable to help others on similar journeys.

Unfortunately, misconceptions about the role and purpose of advocacy abound. Friends, loved ones, and even strangers often make insensitive comments that show their lack of understanding.

We wanted to learn more about the misconceptions about health advocacy that our Health Leaders have encountered. So, we asked the Social Health Network Facebook community, “What is something people misunderstand about health advocacy?”

Here are the top misconceptions the community deals with.

Advocacy is easy-peasy

One misconception of advocacy is that it is easy. Becoming a successful advocate requires dedication and hard work. It takes years to build a thriving network. Advocates invest countless hours working to connect with their audience.

Advocacy also happens while living with a chronic health condition. Flares and fatigue can slow down the work. It does not happen overnight!

“They believe it is easy.” – Racquel H. Dozier

“That it’s not hard to accomplish.” – Scott Matheny

It generates a lot of income

Some believe that advocates make a lot of money from advocacy work. An advocate’s condition often removes them from the workforce, so any income is welcome when living with a chronic illness. But advocacy is not high paying.

Advocates do the work because they believe in raising awareness, not for the money. Advocacy fulfills a sense of purpose with chronic illness. It is also flexible and able to be scheduled around doctor appointments and bad days.

“Either they believe it’s lucrative, or feel it’s normal that we do everything for free.” – Annie-Danielle Grenier

“That we are taking advantage of our health condition for personal gain.” – Erica Nicole Carrasco

Advocates are attention-seeking

Another misconception of advocacy work is that it is self-serving. Advocates hear that they are using their disease for attention.

Being an advocate means talking about a chronic illness – a lot! Advocates use their experience to fight false impressions about their disease. Advocacy is not telling a story for pity or sympathy, but to help others learn. They do not want others with the disease to feel as alone as they did.

“Other people think we’re just looking for pity or attention.” – Kerry Wong

“That we never ‘shut up’”! – Lorene Alba

“That we do it for attention / that it’s glamorous.” – Natalie Hayden

“That we are just whiners, and if our health problems make us high risk, we should ‘just stay home.’” – Andrea Jensen

Advocacy is not legitimate work

Advocates often receive criticism about their work. People may suggest it is not a real job or title. Some even interpret advocacy efforts as trouble-making. They do not understand why advocates need to do what they do.

Advocates invest a lot of themselves in their work. They raise their voices to help others access accurate diagnoses and care.

“That advocacy is not a title.” – Randy Madara

“They say we are ‘troublemakers.’” – Ellen Reed

Thank you

We appreciate everyone who engaged with this prompt. Please continue the conversation below! What other misconceptions about health advocacy have you encountered?

Join the Social Health Network here.

The post The Biggest Misunderstandings About Health Advocacy appeared first on Social Health Network.

And now, the moment you’ve been waiting for…

The 2023 Social Health Awards Winners…

Rookie of the Year

Winner: James Hollens

Creative Contributor

Winner: RARE.

Caregiving Champion

Winner: Parvathy Krishnan

Revolutionary Researcher

Winner: Tina Aswani Omprakash

Community Cultivator

Winner: Sharron Rouse

Best Team

Winner: PodcastDX

Social Media Master

Winner: Cynthia Covert, The Disabled Diva

Healthcare Collaborator

Winner: Shoshana Lipson

Advocacy Trailblazer

Winner: Gerry Langan

Lifetime Achievement

Winner: David Lyons

The Celebration Continues…

The post Announcing the 2023 Social Health Awards Winners! appeared first on Social Health Network.