Media

READ: Article on patient education through social media, out in PEN

The latest issue of the quarterly US-based publication, Parent Empowerment Newsletter (PEN), produced by LA Kelley Communications, Inc., is now available, featuring an article from On The Pulse, entitled: Patient Education Through Social Media in the COVID Era.

PEN is one of the most popular and credible sources of up-to-date news and information for people living with a bleeding disorder and their caregivers. The Editor-In-Chief, Laurie Kelley, is a globally-renowned and beloved thought-leader in haemophilia advocacy, who we were delighted to feature in our Factor This! Series in 2018.

For this first PEN release of 2021, On The Pulse director, Laurence Woollard, was invited to contribute to the “As I see It” opinion column, which gives a voice to active members of the bleeding disorders community from various backgrounds, to address topical issues on the regional and/or global agenda.

 

Rise of the “e-patient”

In the last decade, the growth of web-based health-related content and digital health tools have been increasingly promoted, as a means of spreading and democratising access to information and helping patients take ownership of their healthcare journey.1

Laurence went onto explain:

“Pre-COVID, more and more people were using social media to gain knowledge and share their health experiences. Since the social distancing measures came into effect, social media has provided a great opportunity to reach and interact with users, particularly those who are concerned that they are at increased risk from the virus due to an underlying health condition.

In this special edition of PEN, on behalf of On The Pulse, I wanted to set the scene with regards to the record rise in social media use during lockdown. Then, address some of the key principles for harnessing social media for health promotion and behaviour change. It’s by looking at the outcomes reporting of social media interventions in haemophilia and associated bleeding disorders – or lack of, as the case may be – that I have provided my own recommendations, to encourage best practice in tailoring and delivering more effective and responsive patient education through social media.”

With regards to the PEN issue, Laurie said:

“In our now 32-year history of PEN, this has always been my favourite issue: the Biennial Resource Review. Education has always been our focus, and this issue provides a great overview of books, programmes and digital resources available to our community.

My friend, Laurence, explains to us why, during the pandemic, social media has become so much more than ‘social,’ and can be vitally educational too.”

The February 2021 edition of PEN (Volume 31; Issue 1) is freely available to download here

 

Front cover of PEN February 2021 issue
Front cover of the February 2021 edition of PEN.

In line with our ethos and commitment to doing business responsibly and helping support the rare disease community that we engage and work with, we made a conscious decision to donate the $500 article fee to the vital operations of Save One Life; a non-profit organisation dedicated to improving the quality of life and future for people living with bleeding disorders in developing countries through financial assistance.

 

About LA Kelley Communications, Inc.

Since 1990, LA Kelley Communications has been a world leader of groundbreaking educational materials and programmes on haemophilia and related bleeding disorders. With more than a dozen books, numerous publications, and the oldest haemophilia newsletter in America (PEN), LA Kelley Communications remains a trusted source of practical information about raising children with bleeding disorders.

For more information about LA Kelley Communications, Inc., please visit their website.

 

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On The Pulse


References
  1. Woollard L, et al. Addressing patient education priorities in the era of gene therapy for haemophilia: Towards evidence‐informed shared decision‐making. Haemophilia 2020. [Online ahead of print]. DOI: 10.1111/hae.14214

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