Participatory Health Through Social Media

Shabbir Syed-Abdul, Elia Gabarron, Annie Lau

• Publisher: Academic Press
• Year: 2016
• Print ISBN: 9780128092699
• eBook ISBN: 9780128095485
• Topic: Medicine
• Subtopic: Web Development

Participatory Health through Social Media explores how traditional models of healthcare can be delivered differently through social media and online games, and how these technologies are changing the relationship between patients and healthcare professionals, as well as their impact on health behavior change. The book also examines how the hospitals, public health authorities, and inspectorates are currently using social media to facilitate both information distribution and collection. Also looks into the opportunities and risks to record and analyze epidemiologically relevant data retrieved from the Internet, social media, sensor data, and other digital sources. The book encompasses topics such as patient empowerment, gamification and social games, and the relationships between social media, health behavior change, and health communication crisis during epidemics. Additionally, the book analyzes the possibilities of big data generated through social media. Authored by IMIA Social Media working group, this book is a valuable resource for healthcare researchers and professionals, as well as clinicians interested in using new media as part of their practice or research. - Presents a multidisciplinary point of view providing the readers with a broader perspective - Brings the latest case studies and technological advances in the area, supported by an active international community of members who actively work in this area - Endorsed by IMIA Social Media workgroup, guaranteeing trustable information from the most relevant experts on the subject - Examines how the hospitals, public health authorities, and inspectorates are currently using social media to facilitate both information distribution and collection

Chapter 1

An Introduction to Participatory Health Through Social Media

S. Syed-Abdul¹, E. Gabarron^2,3, A.Y.S. Lau⁴ and M. Househ⁵, ¹Taipei Medical University, Taipei, Taiwan, ²University Hospital of North Norway, Tromsø, Norway, ³The Arctic University of Norway, Tromsø, Norway, ⁴Macquarie University, Sydney, NSW, Australia, ⁵King Saud Bin Abdulaziz University for Health Sciences, Riyadh, Saudi Arabia

Abstract

Social media provides online platforms for interactions around various health topics relating to patient education, health promotion, public relations, and crisis communication. An important aspect of social media for health communication is to provide valuable peer, social, and emotional support for the general public and patients. Patients can share their experiences through discussion forums, chat rooms and instant messaging, or online consultation with a qualified clinician. There are a variety of benefits and limitations in using social media in healthcare. A perceived benefit is the accessibility and improved access to health information to various population groups, regardless of age, education, race/ethnicity, and locality compared to traditional communication methods. While these changing patterns may lessen health disparities, traditional inequalities and overall Internet access remain. The primary limitations for social media are quality concerns and the lack of reliability of the health information. The large volume of information available through social media and the possibility for inaccuracies posted by users present challenges when validating health-related information. Social media brings a new dimension to health care, offering a platform used by the public, patients, and health professionals to communicate about health issues with the possibility of potentially improving health outcomes. Although there are benefits of using social media for health communication, the information needs to be monitored for quality and reliability, and the confidentiality and privacy need to be maintained. This book explains how social media methodologies and platforms are used in healthcare.

Keywords

Social media; patients; physicians; information; communication; trustworthiness

The use of social media for personal and health use by patients and clinicians is on the rise. This is part of a growing realization that social media can provide a platform for patients to gather information, explore options, and share their experiences. Social Media provides online platforms for interactions around various health topics relating to patient education, health promotion, public relations, and crisis communication. Social media includes various technological approaches such as blogs, microblogging (e.g., Twitter), social networking (e.g., Facebook and PatientsLikeMe), video- and file-sharing sites (e.g., YouTube), e-games, and wikis [1]. An important aspect of social media for health communication is to provide valuable peer, social, and emotional support for the general public and patients. Patients can share their experiences through discussion forums, chat rooms and instant messaging, or online consultation with a qualified clinician [2]. For example, social media can aid health behavior change such as smoking cessation, and “PatientsLikeMe” enables patients to communicate with other patients and share information about health issues [2].

Physicians are also using social media to promote patient health and education. Physicians tweet, create blog posts, record videos, and participate in disease-specific discussion forums focusing patient education. Such forums provide an important opportunity for physicians to distribute evidence-based information to counter inaccurate materials posted on the Internet. In some social media forums, the public is provided with an opportunity to participate in these discussions [3].

There are a variety of benefits and limitations in using social media in healthcare. A perceived benefit is the accessibility and improved access to health information to various population groups, regardless of age, education, race/ethnicity, and locality compared to traditional communication methods. While these changing patterns may lessen health disparities, traditional inequalities and overall Internet access remain. Furthermore, variation in social media engagement according to personality traits, age, and gender suggests the need for ongoing scrutiny regarding equality of access and effectiveness for different users. Social media can be used to provide a valuable and useful source of peer, social, and emotional support to individuals, including those with various conditions/illnesses [2].

The primary limitations for social media are quality concerns and the lack of reliability of the health information. The large volume of information available through social media and the possibility for inaccuracies posted by users presents challenges when validating health-related information [4]. Several studies highlighted concerns about privacy and confidentiality, data security, and the potential harms that emerge when personal data are indexed. Social media users are often unaware of the risks of disclosing personal information online and communicating harmful or incorrect advice. As information is readily available, there is the potential of information overload [2]. Other concerns of the social media use for health are related to ethics. Some ethical challenges are still not answered such as how to deal with the presence of children and youth on the social media accessing and sharing health information and how to keep the privacy and confidentiality in the communication between healthcare professionals and patients through these channels. As there are no official guidelines proposing how to address the ethical considerations of using social media for health, it is recommended that researchers, healthcare professionals, and other stakeholders should carefully weigh the potential harms and benefits for the individuals in every case [5].

Social media brings a new dimension to health care, offering a platform used by the public, patients, and health professionals to communicate about health issues with the possibility of potentially improving health outcomes. Although there are benefits of using social media for health communication, the information needs to be monitored for quality and reliability, and the confidentiality and privacy need to be maintained. With increasing use of social media, there will be further opportunities and challenges for health care [2].

1.1 Organization of the Book

This book explains how social media methodologies and platforms are used in healthcare. This book is organized into seven main chapters and starts with (1) introduction, (2) patient empowerment, (3) social media use by hospitals, (4) social media and health communication crisis during epidemics, (5) Big Data generated through Social Media, (6) Social Media and health behavior change, and ends with (7) gamification and behavioral change: techniques for health social media.

1.2 Patient Empowerment Through Social Media

Chapter 2, Patient Empowerment Through Social Media, offers a historical development of the patient empowerment movement and the role social media has in supporting this phenomenon. A recurring theme of the book, first articulated here, is the need to support patients to develop the capacity to take responsibility of their health. Understanding this fundamental concept and the potential of social media in supporting this movement is important for this book as it represents a paradigm shift of how social media can affect the relationship between patients and clinicians. The chapter explores this concept by illustrating the use of social media in both acute and long-term conditions, using sports concussion and diabetes as examples. It concludes with take-home messages on how we can use social media platforms to empower patients, taking into account their needs and their healthcare context.

1.3 Social Media Use by Hospitals and Health Authorities

Chapter 3, Use of Social Media by Hospitals and Health Authorities, examines social media use by hospital and health authorities, where it is estimated that 95% of US healthcare organizations use social media as part of various community engagement activities [6]. Social media has allowed healthcare institutions to increase visibility and improve their overall image as well as engage with patients. As a result, 12.5% of surveyed American healthcare organizations have successfully attracted new patients through the use of social media [7].

Griffis et al. [6] reviewed the use of social media across hospitals in the United States on four social media platforms: Facebook, Yelp, Twitter, and Foursquare. Richter et al. [8] studied specifically how hospitals use social media and its opportunities to improve hospital services. Most of the hospitals surveyed used Facebook as a tool to educate patients, acknowledge staff, and share information about hospital recognitions such as awards. The authors found that the use of social media can help improve quality improvement efforts.

Dorwal et al. [9] studied the use of the social media messenger services, WhatsApp, in a hospital laboratory management department to improve communication among staff. Specifically, the authors found that there was a significant improvement in communication in the form of sharing photos, information about accidents, alerts, duty rosters, academic activities, and information from superiors. Johnston et al. [10] studied the use of WhatsApp to improve communication among emergency surgical teams. The authors conclude that WhatsApp was a safe communication tool in an emergency setting. These two studies show the use of social media, such as WhatsApp, as a hospital communication tool, where the results show benefits of social media use for communication. In 2015, Hui et al. [11] published a study of an online campaign using Facebook to promote attitudes for seeking mental health help.

One of the main challenges for healthcare organizations is related to understanding the meaningful use of social media sites by patients. Merely visiting a Facebook page or viewing a YouTube video does not signify meaningful use. Higher levels of interaction are needed between the patient and the healthcare institution, and studies to evaluate such interactions should be conducted. Other challenges include dedicating resources to design, maintain, advertise, and update social media sites. Healthcare organizations have not made sufficient investments in this area, and some are beginning to abandon or neglect their social media sites, especially, those organizations that do not see a financial, improved patient outcomes or reduced costs. Yet, the potential for community engagement through social media remains an opportunity for healthcare organizations to engage their communities and market their services.

In summary, there is evidence that social media use by hospitals and health authorities can lead to improvement in healthcare delivery. Although US hospitals have been successful in adopting social media in their healthcare service delivery model, other countries, especially those countries with low internet penetration and social media use, may not benefit from social media as an activity in promoting healthcare. Furthermore, there are issues that relate to privacy and security concerns of patients, especially in countries where there are no healthcare privacy laws that protect patient identities and patients from being manipulated by unscrupulous healthcare institutions.

Moving forward, to keep social media platforms running for the long term by hospitals and health authorities, a sustainable business model needs to be developed and implemented. Hiring of staff, technical expertise, and resources is costly especially in a time where funding of healthcare organizations is shrinking globally. Not being able to generate revenue with the use of hospital resources has led to the misuse, neglect, and the closing down of social media sites by hospitals and health authorities. For example, the Mayo clinic has implemented a successful business model that is generating revenue and has actually led to the expansion of the social media services it provides [12]. Other social media sites remain stagnant without dedicated staff to update them and are generally neglected.

There is a flurry of activities by hospitals and health authorities when using social media and the opportunities for growth both within the hospital and outside the hospital are real. Within the hospital, reducing costs, improving workflow, and improving communication are added benefits to the use of social media. More studies and examples of successful hospital implementations are needed. Outside the hospital, social media has been used to engage patients, obtain feedback on services, provide educational materials, and provide patients access to healthcare services. Although the long-term impacts on patient care are yet to be seen, thus far, social media’s presen...

Table of contents

• Cover image
• Title page
• Table of Contents
• Copyright
• List of Contributors
• About the Authors
• Foreword
• Preface
• Acknowledgments
• Chapter 1. An Introduction to Participatory Health Through Social Media
• Chapter 2. Patient Empowerment Through Social Media
• Chapter 3. Use of Social Media by Hospitals and Health Authorities
• Chapter 4. Social Media and Health Crisis Communication During Epidemics
• Chapter 5. Big Data For Health Through Social Media
• Chapter 6. Social Media and Health Behavior Change
• Chapter 7. Gamification and Behavioral Change: Techniques for Health Social Media
• Conclusions