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SOCIAL MEDIA AS A PATIENT CARE TOOL

Nancy P Blumenthal, CRNP
University of Pennsylvania Medical Center, Philadelphia, PA


nancy blumenthalEvolution in thoracic transplant care has gone well beyond the physiologic challenges met by LVADs, CADD pumps and EVLP's potential. The psychosocial demands of heart and lung failure and transplantation have kept pace with the biological therapies. As such, the means and media by which we educate and support our patients have evolved beyond hospital-based support group meetings and group teaching sessions.

Today, social media provides access to information and community to anyone willing to reach out through the anonymity of the internet. The dangers are obvious: information may or may not be mediated, accurate or interpreted correctly. The benefits are there, too: ready access to information and camaraderie help empower our patients and protect them from the social isolation that can so often accompany chronic critical illness and disability. Like it or not, our patients are online in search of psychosocial support.

Recognizing this reality, several transplant programs have developed or endorsed sites from which patients and caregivers can safely gather and exchange health information. Facebook pages, refereed websites, blogs and members-only listservs are available to help us meet our patients' needs.

LUNG TRANSPLANT NEWS BLOG

At the University of Pennsylvania, the lung transplant team partnered with health system marketing to develop a weekly electronic newsletter in the form of a blog (www.pennmedicine.org/lungtransplantnews). Content ranges from health reminders to program updates and serves to inform and educate subscribers on issues unique to lung transplant patients and their caregivers. While most content is written by clinical staff of the program, the most popular features are patients' autobiographical success stories. Patients are invited to subscribe to the blog at their first encounter and again with general program mailings. Subscription to the newsletter is unrestricted (anyone can subscribe) and completely voluntary allowing readers to opt out at any time. One year after the inaugural edition of LungTransplantNews, there are over 200 subscribers gathering and sharing electronic information that is created (or, at least, vetted) by their lung transplant team.

Disclosure Statement: The author has no conflicts of interest to disclose.

MyLVAD.com - AN ONLINE LVAD GOLD MINE

Michael G Petty, PhD(c), RN, CCNS, CNS
University of Minnesota Medical Center-Fairview, Minneapolis, MN

michael pettyMore than anything else, LVAD patients and their caregivers are seeking a resource to pose questions and get information about the day-to-day things that impact their lives. How do I coordinate time to mow the lawn, to go to the movies, to get my hair permed? What do other people do? Those who surround and support the LVAD dyad are looking for more information on how LVADs work, what the impact of the device is on the rest of the patient's life, how to offer help, etc. Medical professionals unfamiliar with LVAD technology and its potential to help their patients often look for a source outside of industry to provide a comprehensive view.

Washington Hospital Center, under the leadership of Dr. Steven Boyce and his team of LVAD coordinators, has developed MyLVAD.com as a place for all of these individuals to connect to seek answers to their questions. The mission of the website is simply stated: to improve the quality of life and outcomes for people living with LVADs. This is accomplished by electronically connecting LVAD recipients, their loved ones, and healthcare professionals involved in the care of these patients through the website and utilizing social media including Facebook and Twitter. With a quick click of the mouse, one can access data, videos, blogs, maps, and stories related to LVADs and LVAD life. Questions are asked and answered by those involved in the lives of LVAD patients. Information is tailored to the needs of the various communities the website intends to serve.

MyLVAD.com is an outstanding example of the way social media will continue to play a role in the medical community, and specifically in the lives of those with LVADs.

Disclosure Statement: The author has no conflicts of interest to disclose.

NHSAH GOOGLE GROUP: A SECURE NETWORK TO QUERY YOUR PEERS

Alison Amegatcher, RN
UCLA School of Medicine, Los Angeles, CA

Social media sites like Twitter and Facebook have a plethora of pages with good to mediocre information filling a void its users perceive they have. The problem of confidentiality with these sites and the suitability for use by healthcare practitioners is an ongoing debate. With these thoughts floating through our minds several ISHLT councils have setup Google Groups or Google + Circles as simple but secure tools for discussions.

Late last summer, the NHSAH Council started testing the feasibility of using Google Groups as a tool for confidential communication amongst members. Healthcare Information Portability and Accountability Act HIPPA laws would be followed by all users. Questions and answers went out to test members of the group and notification emails of new content were sent to users per their setup preferences.

To date, the benefits of this easily accessible but secure site for all users are the wide international audience and feedback obtained by all. You can join the group by sending an email to nursing-ishlt@googlegroups.com.

Disclosure Statement: The author has no conflicts of interest to disclose.

SEEKING SUPPORT ONLINE:
A FACEBOOK SUPPORT GROUP FOR VAD PATIENTS AND CAREGIVERS

Jennifer Kealy, RN
St. Paul's Hospital, Vancouver, BC, Canada

jennifer kealy It has been well established that stable support groups improve health outcomes for people with a wide range of chronic conditions, including heart failure.1 When patients managing the same chronic condition share experiences and observations with each other, it results in a collective wisdom and greater clinical insight than that offered by any single patient or health care provider.2 Ventricular Assist Device (VAD) patients are no different - they highly value the knowledge they gain from each other.

For over two years St. Paul's Hospital in Vancouver, Canada held monthly support group meetings for VAD patients and their caregivers. The group was led by a VAD coordinator and clinical nurse specialist with facilitation from a psychologist and social worker. Each month the group would meet for two hours, starting with a general round table discussion for participants to share stories, experiences, and ideas with each other. The latter portion of the meeting would include a short presentation by a health care provider on a topic aimed at improving the quality of life of VAD patients and caregivers - such as maintaining intimacy with a partner, traveling with a VAD, among others. The group not only provided a means for patients to connect with each other, but also provided an opportunity to offer supportive education. The group was well attended and the feedback was positive. Patients and caregivers were openly sharing stories - they were not only learning from each other, but inspiring each other as well. The exchange of peer knowledge and expertise that occurred was extremely valuable and worthwhile. However, the biggest challenge was finding a way to make the group more accessible and less of an inconvenience. With the face-to-face format, it was difficult to find a time that suited everyone's schedules and it seemed contrary to expect patients and caregivers to return to the hospital each month for support. One potential solution was the use of an online social network.

The most popular social network is Facebook with over 800 million active users. According to the company's website, 1 in 13 people worldwide have a Facebook account, half of which are logged in on any given day. An astounding 48% of 18 to 34 year-olds around the world log onto Facebook as soon as they wake up and 28% check it on their smart phones before getting out of bed. And it is not just for the youth; the 35 and older demographic now represent more than 30% of the entire Facebook user base.

Given the popularity and reach of Facebook, it seemed like an effective avenue to connect VAD patients and caregivers. Hence, a VAD Support Group on Facebook was created and patients and caregivers from St. Paul's Hospital were invited to join. Initially the group was small and the VAD coordinator posted the majority of the content such as posing questions to the group to stimulate discussion, posting links to interesting articles and links to YouTube videos of VAD patients participating in different activities such as playing golf.

As word got out, the group quickly expanded. Now with almost 100 members, VAD patients and caregivers are maintaining the group themselves. Patients are frequently posting new content. They are sharing personal stories, offering suggestions, and providing supportive comments to each other. While there was some initial fear that patients may post misleading or unhelpful content, this has not been the case. The group seems to self-govern or polices itself. Like any active community, the members hold each other accountable and call each other out if need be. To date there have not been any inappropriate comments requiring removal from the site. Other concerns, inherent with being a Facebook site, are privacy and confidentiality. Facebook is a public social network open to anyone with an email address. To manage these issues, the group was created as a "closed group" which means only accepted members can log on and view the content. Individuals interested in joining the group must submit a request to become a member and be accepted by one of the group's administrators. While this limits the number of people who can log on and view the group, it does not ensure complete confidentiality. Members are cautioned to consider anything they post as public domain. By and large, we have found the Facebook support group to be a valuable adjunct to our in-person VAD support group. The online format reduces the time and distance barrier, eliminates the restriction on group size, increases the variety and diversity of members, and ultimately improves access to peer expertise and support. With almost 100 members from around the world, this new virtual community has expanded the possibilities of support for VAD patients and their caregivers.

Disclosure Statement: The author has no conflicts of interest to disclose.

References:

  1. Sayers, S. L., Riegel B., Pawlowski, S., Coyne, J. C., Samaha, F. F. (2008). Social Support and Self-Care of Patients with Heart Failure. Annals of Behavioral Medicine 35(1), 70-79.
  2. Sarasohn-Kahn, J. (2008). The Wisdom of Patients: Health care meets online social media. iHealth Reports. California Health Care Foundation.