January 2021

Spotlight on Patient Education Through Social Media in the New Normal

Laurie Kelley January 31, 2021

Laurence Woollard

The unparalleled, seismic societal shifts over the past year have made many of us readjust in ways never before imagined. At the time of writing, with pandemic fatigue already a reality, here in the UK we are facing yet another national lockdown imminently, with the uncertainty that this may not be the last. The strict physical distancing measures has meant that, more than ever, people are heavily reliant on maintaining connectivity using global digital social networks to facilitate human interaction and information sharing at a historic and extraordinary scale.[1,2] According to We Are Social, a creative agency who publish a quarterly digital report with social media management platform, Hootsuite, by October 2020, the number of people using social media around the world passed the momentous 4 billion milestone mark, with an average of 2 million new users joining every day. Much of this growth in social media use is the direct result of the new technological habits that people adopted during COVID-19 lockdowns.[3] It comes as no surprise then that Facebook, who also own Instagram and WhatsApp, were listed by the Financial Times in the top 10 among 100 companies “prospering in the pandemic”.[4]

Whilst the environment created by the coronavirus outbreak has, on the one hand, bred a multitude of falsehoods on social media from so-called “armchair epidemiologists”,[5] the rise in online traffic from housebound, captive audiences has also inspired ever-greater entrepreneurial hustle. Social media is unique in this respect; it places individuals at the centre of a vast network and shifts power by allowing anyone to be an influencer.[6] YouTube has been the go-to platform for those wishing to keep fit during lockdown and with gyms being forced to close, has been inundated with searches for yoga, pilates… and not forgetting workouts for the glutes! One of the first stand-out “heroes” of this crisis was “The Body Coach”, a UK-based fitness TV personality, offering free daily online sessions that accrued 75 million views internationally across 18 weeks.[7] However, even with such popularity, by social media’s very nature, there was no hiding from critics. Physical education (PE) practitioners were quick to react to “PE with Joe” as it was known, by generating their own innovative online content using the hashtag “#ThisIsPE”, to reflect the diversity of young people in mainstream education they felt hadn’t been accommodated for, especially those with a disability.[8]

Nonetheless, Joe et al were arguably responsible for bringing into sharp focus the importance of exercise for body and mind. For many people in the bleeding disorders community under lockdown, decreased physical activity may have impacted negatively on their joint and muscle status.[9] In response to this, patient advocacy groups have been forced to adopt and improve virtual operations and e-learning approaches using social media to promote the wellbeing of their members. For example, the European Haemophilia Consortium (EHC) hosted their physical activity campaign ‘#thisway’ through monthly Facebook live sessions with a specialist physiotherapist.[10] It is also noteworthy that there is an emerging literature suggesting that social distancing has put a strain on the mental health of many individuals. For young adults in particular, the World Health Organisation (WHO) has suggested staying connected with peers through social media can help them to remain positive and challenge stigma. The explosion in popularity of the entertainment-based platform, TikTok – with over 30 million monthly users in the United States alone – has demonstrated the potential, not only to convey important health information, but to address these aspects of the pandemic as well.[11]

Even pre-Covid, more and more people were going to social media to acquire knowledge and share experiences about their health.[12] To this end, the use of social media to increase and promote translational health communication strategies is being realised and has been advocated as an inexpensive means for patient education, to enable and empower consumers in their health and healthcare-related interactions.[12-14] This is particularly pertinent for people living with chronic conditions, including the six in ten Americans with at least one diagnosis,[15] and like those affected by haemophilia, where management and care can be self-guided, fostered through online peer-to-peer interaction and validation, or guided by an external source (e.g. facilitator or healthcare professional).[12] The number of physicians involved with haemophilia practice developing an interest themselves in social media in a professional capacity is increasing, championed by the likes of Professor Mike Makris in Sheffield, UK, who has become a reference point on Twitter (@ProfMakris) for research and treatment developments, and influencer in his own right. Accordingly, Professor Makris perceives that, “Information is no longer a privilege and the time when patients are more up to date and better informed than their doctors is already here.”[16]

Feeling empowered in decision-making about one’s health can play an important role supporting individuals as they seek positive health behaviour and lifestyle change.[14] Yet, to realise the benefits of health education that today’s healthcare infrastructure demands, a high level of patient participation and engagement is essential.[17,18] Preliminary studies have shown that social media interventions lead to some positive effects on health of people living with chronic diseases, such as promoting self-care, fostering self-confidence and psychosocial benefits, but these results are small and limited.[12,14] Likewise, the reporting in haemophilia is scarce, although a recent attempt has been made to increase awareness of Von Willebrand disease (VWD) by targeting women in their reproductive years on social media and inviting them to participate in an online self-assessment tool to recognise abnormal bleeding symptoms.[19]

While it is now a given to view social media as a universal communication channel, especially for those adept and savvy at using it, the risk lies in reducing health information access among those who are not technologically ‘’connected”;[13] notably, 22% of the UK’s population lack basic digital skills,[20] and 31% of rural households in the US are still without access to broadband internet.[21] The public health crisis gripping both sides of the Atlantic, stands to make the impacts of digital exclusion worse for the millions of people affected, and the socio-economic disadvantaged will be hit the hardest. What’s more, eHealth literacy – consisting of health and science literacy, among others – underpins users’ competence in leveraging online health information and tools for improvements in quality of life.[12] Providers designing social media interventions or campaigns must be mindful of the different population segments in the patient community to ensure equality of access to educational opportunities, so they are not just targeting those more socially mobile in society, and the tech- and eHealth-literate cohort of engaged members. Moreover, there is still a strong need to examine not only how to tailor and deliver more effective and responsive patient education through social media, but also how to assess its impact on patient health outcomes in the ‘new normal’.

About the author

Laurence Woollard is founder and director of On The Pulse – an independent, strategic consultancy providing specialist insight to UK and global healthcare providers on the development and rollout of patient activation campaigns in haemophilia and rare diseases. He has extensive patient advocacy experience, having advised on and implemented a broad scope of community awareness, research and educational initiatives for commercial partners and third-sector organisations. Laurence is highly driven by his own journey and challenges of living with severe haemophilia and the impact on the family dynamic, to campaign for and effect real change in improvements to quality of life for his peers.

Twitter: @TheWoollard / @OnThePulse

References

[1] Limaye RJ, et al. Building trust while influencing online COVID-19 content in the social media world. Lancet Digit Health 2020;2(6):E277-78. Doi: 10.1016/S2589-7500(20)30084-4

[2] van Bavel JJ, et al. Using social and behavioural science to support COVID-19 pandemic response. Nat Hum Behav 2020;4:460–71. Doi: 10.1038/s41562-020-0884-z

[3] We Are Social. Digital 2020: October Global Statshot Report. 2020. [Online]. Available at: https://datareportal.com/reports/digital-2020-october-global-statshot [Accessed November 2020]

[4] Financial Times. Prospering in the pandemic: the top 100 companies. 2020. [Online]. Available at: https://www.ft.com/content/844ed28c-8074-4856-bde0-20f3bf4cd8f0 [Accessed November 2020]

[5] Limaye RJ, et al. Building trust while influencing online COVID-19 content in the social media world. Lancet Digit Health 2020;2(6):E277-78. Doi: 10.1016/S2589-7500(20)30084-4

[6] Leong C, et al. Social media empowerment in social movements: power activation and power accrual in digital activism. Eur J Inf Syst 2019;28(2):173-204. Doi: 10.1080/0960085X.2018.1512944

[7] Joe Wicks. The Body Coach profile. 2020. [Instagram]. Available at: https://www.instagram.com/p/CC1FO0ED6_l/ [Accessed November 2020]

[8] Fitzgerald H, et al. COVID-19, lockdown and (disability) sport. Manag Sport Leis 2020. DOI: 10.1080/23750472.2020.1776950

[9] De la Corte-Rodriguez H, et al. What COVID-19 can mean for people with hemophilia beyond the infection risk. Expert Rev Hematol 2020;13(10):1073-79. Doi: 10.1080/17474086.2020.1818066

[10] European Haemophilia Consortium. EHC exercise campaign #thisway goes virtual. 2020. [Online]. Available at: https://www.ehc.eu/ehc-exercise-campaign-thisway-goes-virtual/ [Accessed November 2020]

[11] Basch CH, et al. COVID-19 on TikTok: harnessing an emerging social media platform to convey important public health messages. Int J Adolesc Med Health 2020. [Ahead of print]. Doi: 10.1515/ijamh-2020-0111

[12] Zhou L, et al. Harnessing social media for health information management. Electron Commer Res Appl 2018;27:139-51. DOI: 10.1016/j.elerap.2017.12.003

[13] Stellefson M, et al. Evolving Role of Social Media in Health Promotion: Updated Responsibilities for Health Education Specialists. Int J Environ Res Public Health. 2020;17(4):1153. DOI: 10.3390/ijerph17041153

[14] Korda H, et al. Harnessing social media for health promotion and behavior change. Health Promot Pract 2013;14:15–23. DOI: 10.1177/1524839911405850

[15] Centers for Disease Control and Prevention. National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP). 2020. [Online]. Available at: https://www.cdc.gov/chronicdisease/index.htm [Accessed November 2020]

[16] Makris M. Twitter and Haemophilia. Haemophilia 2020;26(2):181-82. DOI: 10.1111/hae.13931

[17] Adams R. Improving health outcomes with better patient understanding and education. Risk Manag Healthc Policy 2010;3:61-72. Doi: 10.2147/RMHP.S7500

[18] Gruman J, et al. From patient education to patient engagement: implications for the field of patient education. Patient Educ Couns 2010;78(3):350–56. Doi: 10.1016/j.pec.2010.02.002

[19] Reynen E, et al. Let’s Talk Period! Preliminary results of an online bleeding awareness knowledge translation project and bleeding assessment tool promoted on social media. Haemophilia 2017;23:e282–6. Doi: 10.1111/hae.13271

[20] Holmes H, et al. “Pay the wi-fi or feed the children”: Coronavirus has intensified the UK’s digital divide. 2020. [Online]. University of Cambridge. Available at: https://www.cam.ac.uk/stories/digitaldivide [Accessed November 2020]

[21] Ramsetty A, et al. Impact of the digital divide in the age of COVID-19. J Am Med Inform Assoc 2020;27(7):1147-48. Doi: 10.1093/jamia/ocaa078

Richard’s Review: Fictional Family Members

Laurie Kelley January 24, 2021

by Ricard Atwood

What does a typical family in the bleeding disorder community look like? I don’t know. There’s so much variability in family composition that the range of normal seems boundless.

Novelists may base their fictional characters on people they know, or use their imagination to create characters. Some novelists want to make a bleeding disorder an important part of their novel’s plot, yet choose another family member as the leading character. I’m curious about these protagonists—wife, mother, sister of someone with a bleeding disorder—in the following novels.

A Place for Kathy

Henry Denker William Morrow, 1997

Tessa Taylor, 40, has a type-A personality and runs her own organic makeup company. She is married with three kids. Living on the Florida panhandle coast, Tessa hunkers down alone for a Category 4 hurricane, with her family elsewhere. Curious, she snoops on her architect husband Ethan’s iPad and discovers his affair with Lindsey, a 26-year-old nursing student. Tessa tricks Lindsey into coming to her home, even though she has no power and no gas for the generator. The two women fight, verbally and physically, over Ethan—only to discover that he has additional mistresses. During the storm, and in the middle of this fight, Tessa’s eldest child, Colt, who is 18 years old, 6’6″ tall, and 200 pounds, returns from Florida State University because he runs out of meds for his hemophilia. Colt knows that his mother always keeps some in the refrigerator. Colt arrives bleeding profusely from his leg. Both women stop their fighting to care for Colt by hanging blood-clotting factor bags on an IV pole, which I found to be a puzzling way to treat hemophilia. Fortunately, mothers always seem to be prepared, regardless of the age of their child with a bleeding disorder.

Mine

Courtney Cole. Gallery Books, 2019

This melodramatic novel is sure to produce misty eyes, if you overlook some of the contrived storyline. In 1994, Grace Cameron becomes a widow when her husband, Kip, dies unexpectedly from a brain hemorrhage caused by a fall while hiking. Kip taught literature at a midwestern university, but had no life insurance because of his pre-existing condition, hemophilia. Grace learned of Kip’s hemophilia when they first dated, and she knew that he had tested negative for HIV. So in 1996, she is shocked to learn that she is HIV positive. As her medical symptoms worsen over 18 months, despite numerous antiviral drugs (AZT, DDC, DDI), Grace is overwhelmed by the prospect of dying. She is desperate to find a home for her 13-year-old daughter, Kathy. For Grace, few people meet her strict criteria as caregivers for Kathy. As I read the book, I wondered why Grace never hired a lawyer to plan her daughter’s guardianship, and never joined an AIDS support group. Or why Kip never attended an HTC. Still, spouses of HIV-infected people with hemophilia need more recognition for their important caregiving roles.

The Key to Finding Jack

Ewa Jozeflowicz. Zepher, 2020

Felicity Chesterford, who goes by “Flick,” is enrolled in secondary school in London. She assists her older brother, Jack, in his quest to solve puzzles. Jack finishes his A-level exams in June and plans to spend a gap year traveling in South America. Their father, a barrister, pressures Jack to become a lawyer. Their mother, who runs a social media company, is overprotective of Jack because he has hemophilia. Jack is well prepared with a special medical kit and a doctor’s letter for his hemophilia. Unexpectedly, in January an earthquake hits Lima, Peru, where Jack is headed. Communication is impossible. Flick and her best friend, Kiera, decide to act like detectives to uncover clues that will locate her missing brother, who might be in a medical emergency. Flick is successful, while the foreign office and local police are not, in finding Jack. In this novel for young readers, the plot emphasizes finding clues to solve puzzles, while the often neglected role of sibling bonding, when bleeding disorders are involved, receives recognition.

***

As seen in these novels, family members without bleeding disorders are just as important as the ones with bleeding disorders. The novelists realize that, while the bleeding disorder provides the drama, other family members can play a leading role. All this creates a dynamic fictional situation, one that reflects reality.

Why I Choose Cannabis for My Pain

Laurie Kelley January 17, 2021

Felicia Carbajal

[I have to preface this article by saying that while I never used recreational drugs, lately I have had a consistent, disruptive backache that I am still trying to resolve. It’s interfering with my quality of life by now, and upon recommendation of some people, I’ve tried CBD cream. I have to say I love the results! So I thought I’d reprint this article from the February 2020 issue of PEN, by someone who knows her stuff! …Laurie]

The cannabis plant has been deeply engrained in American history since our country’s inception. Commonly called medical marijuana and hemp, cannabis sativa has been used in everything from textiles and paper to medicines and spiritual tools. Although cannabis has been viewed as harmful or illegal, it has the potential to combat our nation’s opioid crisis, repair some of the harm caused by the war on drugs, and offer Americans a natural alternative to pharmaceutical drugs.

Why do I believe so strongly that cannabis can do all of this? It’s pretty simple: cannabis has been a wonder drug for treating my chronic pain from a spinal cord injury over a decade ago. It has also revolutionized the treatment of my depression, anxiety, and PTSD, and has numerous therapeutic effects when used in its various forms.

After my last back surgery, a microdiscectomy, I took Vicodin to manage the pain, but this would alter my mood and only mask the pain momentarily. I wasn’t myself, and the pain always came back. My medical team said this would be my life. Between the epidural injections and physical therapy sessions, I began researching alternatives.

I tried everything to reduce my pain. I bought gadgets like seat and hand-held massagers, a laser acupuncture pen, and electrostimulation devices. I tried countless complementary therapies like chiropractic treatments and acupuncture. Up to that point, cannabis was last on my list of options. Fortunately, I was introduced to a world-renowned medical professional who was working with patients on low-dose cannabis options with controlled intake of THC. His team gave me a bottle of tincture to try. Three days later, I was pain-free, no longer needing Vicodin, and smiling.

This introduction marked the beginning of my journey with cannabis. I knew the power of sharing my story, and became even more intrigued by the potential of this plant as I weaned myself off a cocktail of anxiety, depression, and pain meds that caused more harm than good. I knew I had to keep learning.

First, I researched the legal history of cannabis. I grew up a DARE¹ evangelist during the 1980s and was unaware of cannabis’s history in the US dating back over a century. Hemp was a valuable crop in the American colonies, used for a variety of purposes, including paper and rope. Eventually, it entered American pharmacopeia as cannabis and became a tool for advancing conservative agendas. Today, more than half the country has some form of regulated cannabis, and a majority of states allow the sale and transportation of hemp-derived products.

Next I explored the science of cannabis. I had friends who’d been diagnosed with HIV and AIDS and knew that this was their medicine, but I didn’t understand why or how. I dove deep into the research and discovered the endocannabinoid system (ECS).²

The ECS is a network of neurotransmitters and receptors that work round-the-clock to help keep the body in homeostasis. Found throughout the bodies of mammals and other vertebrates, the ECS responds to the presence or deficiency of cannabinoids, which can be endogenous (produced within the organism) or exogenous (produced externally).

Endocannabinoids are produced internally and regulate the function of just about every physiological system within the body. Phytocannabinoids are endocannabinoids derived from plants, including but not limited to cannabis.

Naturally, I went to my physician and began asking about the ECS. To my surprise, she knew little about it. I shared some links from the National Institutes of Health (NIH)³ and other research bodies⁴ about current clinical trials and research.

My biggest recommendation: When you explore cannabis, be safe. The cannabis industry is in its infancy; with recent reports of cannabis-induced health concerns, it’s imperative to purchase from a licensed, regulated producer. You should be able to view the lab test results of any product you buy, so you know exactly what you’re putting in your body. There are lots of options everywhere, including websites like Amazon, so be mindful! And if possible, test what you’re using.

Finally, make sure you’re aware of the laws and regulations in your area. This is essential as more and more states regulate.

I’m fortunate to live in a state with regulated cannabis, which means I have access to clean, tested cannabis products—a privilege I don’t take lightly. I have the opportunity to explore other cannabinoids, including THCA (tetrahydrocannabinolic acid) and THCV (tetrahydrocannabivari) in conjunction with terpenes, aromatic plant essences found abundantly in cannabis that can provide therapeutic relief and enhance the efficacy of other compounds when combined (the “entourage effect”).

For those who are new to cannabis or who live in unregulated areas, take this chance to educate yourself. Check out sites like Project CBD,⁵ GreenFlower Media,⁶

and Leafly,⁷ and dive into the data. Go to the NIH website⁸ and type “cannabis” along with your condition to review the research. The reality is that cannabis is personalized medicine, and the one-size approach won’t work for everyone.

After years of taking opioids, I’m finally free. Cannabis can improve the quality of your life, too. Understand and explore the possibilities of cannabinoid therapies. Together we can fight the stigma and perception surrounding cannabis, save countless lives from opioid-related overdoses and deaths, and heal the harm from the war on drugs by voting for sensible drug policy.

Felicia Carbajal is a values-based community organizer, social entrepreneur, change-maker and innovator in the cannabis industry. Based in Los Angeles, the cannabis capital of the nation, Felicia has over two decades of experience in California’s cannabis market. Felicia has worked with world-renowned cannabis medical professionals, has consulted numerous cannabis brands, and is a trusted resource for multiple patient and consumer communities. Currently Felicia is executive director of the Social Impact Center: felicia@thesocialimpactcenter.org.

1. Drug Abuse Resistance Education

2. www.uclahealth.org/cannabis/human-endocannabinoid-system

3. nccih.nih.gov/health/marijuana

4. www.cancer.gov/about-cancer/treatment/cam/patient/cannabis-pdq
5. www.projectcbd.org

6. green-flower.com

7. www.leafly.com 8. nih.gov

When Compassion Meets Anger

Laurie Kelley January 10, 2021

This past week we witnessed anger vented at our government like we have never seen from Americans in our lifetime. I wondered how to address it in a blog meant for bleeding disorder topics. I couldn’t ignore that it happened. I tried to focus on something positive this week. I found myself thinking about compassionate heroes: those who put themselves in harm’s way to get footage of the riots; who tried to help people who were injured; who used kinder language to soothe anger and hate.

As I was thinking of this, I recalled our own situation in 1992, when I attended my first national hemophilia meeting in Atlanta. My book Raising a Child with Hemophilia was being promoted, and I was so focused on that, and raising my 5-year-old with hemophilia and 2-year-old daughter, that I was shocked when during an interview a newscaster asked me what I thought about what was happening at the NHF meeting down the road. What was happening? I didn’t know what she was talking about. I was oblivious.

I soon found out. Stepping into the exhibit hall, where pharmaceutical companies promoted their booths, I saw protesters yelling, waving their arms, scaring people. One had red paint smeared on him and wore a death mask. They then marched together throughout the hall, banging a drum, calling out companies. It was grim. Some pharmaceutical reps fled the scene. In fact, most did. The booths were being emptied quickly.

At one booth, a lone rep stood his ground. I was standing next to him when Michael Davon, a person with hemophilia and HIV from Boston, walked up to him and began yelling. Michael was quite taller than the rep and intimidating. He threw packages of needles in the man’s face and yelled, “And your needles are the wrong size!”

I wondered what could possible happen next.

Joe Pulgliese, general manager of Armour Pharmaceuticals, the man who had the needles thrown in his face, responded calmly, “I think there are bigger issues here to talk about instead of needle size. Tell me what the problem is.”

The rage, absolute rage about being infected with HIV from contaminated blood products; pharma’s role in this; cover-ups; not being believed and not being heard; the deaths of friends and colleagues.

By simply exposing himself to the anger, absorbing it, taking a stand and offering a listening ear, Joe calmed Michael down. They sat. I watched from the sidelines in amazement as Michael quieted but continued his list of accusations. When everyone else fled, Joe had stayed, unafraid.

I saw the power of compassion, even in the face of potential violence, and the power of listening. Angry people want to be heard. But often our first reaction is to retreat, or defend ourselves. Or even fight back. No one ends up listening. Angry people have a right to be heard. Violence is not acceptable, but not being heard and not feeling compassion can lead to heightened emotions, and even violence.

Today is Joe’s birthday, and I’m proud to say he has been a friend since 1989. He was my first contact in the hemophilia community, and he has been a friend to the community for decades. He secured funding for so many nonprofits for family programs and camps. He approved my book in 1990, when I was a complete unknown. And he works today still, overseeing the Hemophilia Alliance, which helps HTCs with funding, to keep them viable, to serve us.

There will always be angry people, there will always be protesters, and there will always be wrongs that need to be righted. But there aren’t many people who stand in the face of it all, look it in the eye, and say “Tell me what’s wrong.”

Happy birthday, Joe! We have been and still are blessed to have you in this community.

Mountain Madness

Laurie Kelley January 3, 2021

The pandemic rages, winter is here; in the Northeast, it’s dark by 5 pm, gloomy, cold. It’s a great time to snuggle up with loved ones after a week of vacation, to watch a movie at night. On social media, people are recommending The Crown, The Last Czars (little bit of hemophilia in there) and even The Ripper.

Here’s a great family movie that I’d recommend: Bombardier Blood.

This is the movie about Chris Bombardier, a young man with hemophilia B, who set out to summit the seven highest mountains on each continent. North America, South America, Asia, Europe, Africa, Australasia and Antarctic: different heights, climates and topographies. Although expensive, time-consuming and death-defying, Chris did it. And Bombardier Blood captured his journey, from training to traveling to hiking. It will make you sit in awe, cry, laugh and be so proud.

And if you look at my flat-screen collection of documentaries, there is a definite theme: mountain madness! I love mountains, have done a bit of climbing myself, and follow the history of mountain climbing, including the Seven Summits.

Put Chris’s accomplishments into perspective, ignoring that he has hemophilia: of the 108 billion humans who have ever been on this earth, less than 500 have ever completed the Seven Summits. And one of our own, Chris, has done it.

And I’ll add that he did it as a fundraiser for our nonprofit, Save One Life, and to highlight the hardship of those with bleeding disorders in developing countries. That alone is worth the watch.

Laurie Kelley in the Andes: “The mountains are calling, and I must go”

Bombardier Blood was made by Believe Ltd, founded by Patrick James Lynch, another man with hemophilia. And originally funded by Octapharma, a European company that manufactures clotting factor wilate® and nuwiq®.

I’m partial to superhero movies. I love the Marvel Universe and especially love X-Men, the Avengers and even Deadpool (despite his dreadful language). But in Chris we have a real-life superhero. And he is now executive director of Save One Life. His journey to new summits continues, all to benefit our family in need overseas.

Watch it, buy it. About 20% of proceeds go to Save One Life. A win-win for all!

Available on iTunes and Amazon Prime.

January 2021

Richard’s Review: Fictional Family Members

Why I Choose Cannabis for My Pain

When Compassion Meets Anger

Mountain Madness

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