OJNI

Development of a Social Networking Site for Patients and Families: A Doctoral Level Nursing Informatics Project

By

Ann McNeill DNP(c), MSN, FNP-BC, CCRC,

Andrea S. Underwood, DNP(c), FNP-C,

Amy Wisniewski, DNP(c), MSN, APRN

Susan Sitzenstock DNP(c), MSN, FNP-BC,

and Roseanne Fairchild, PhD, RN, CNE, NE-BC

Citation

McNeill, A., Underwood, A., Wisniewski, A., Sitzenstock, S. & Fairchild, R. (February 2013). Development of a Social Networking Site for Patients and Families: A Doctoral  Level Nursing Informatics Project. Online Journal of Nursing Informatics (OJNI), vol. 17 (1), Available at  http://ojni.org/issues/?p=2394

Abstract

The purpose of this paper is to discuss the development of an informational, evidence-based health and wellness social networking website for patients and families by a cohort of Family Nurse Practitioners (FNP) during their Doctor of Nursing Practice (DNP) program. The social networking site was created and launched as one of the major requirements of the doctoral level nursing informatics course. Collaborative creation of the health-related social networking site allowed for multiple positive learning outcomes:  1) Introduction to the principles of user-friendly website design; 2) provision of learning opportunities in the creation of relevant health information materials in the topics of health, wellness, and chronic disease management; and 3) presentation of evidence-based health information that is delivered solely via the internet.

Keywords:  Social networking, Health website, Evidence-based, Information technology, Doctor of Nursing Practice.

Introduction

Technology continues to change the manner in which healthcare is managed and delivered. Advances in technology continue to transform the provision of healthcare and lengthen and improve the quality of life (Humphries, 2010). Health information technology (HIT) is necessary to connect healthcare providers and patients globally, while providing evidenced based, high quality, cost effective medical therapies and treatments. In 2009, President Obama remarked in the State of the Union Address that computerizing medical records should reduce errors, lower costs, ensure privacy, and save lives (Box et al., 2010). Hospitals and healthcare systems often utilize Internet websites to help educate patients, family members, and the general public.

Social networking and HIT provide vehicles for patient care to be delivered “in real time” while connecting providers and patients “virtually”. Social networking and HIT are reported to be the future of healthcare delivery, and these technologies help increase the ability of people to communicate and collaborate, despite the obstacles of geography and time (Bacigalupe, 2011). Currently, there are approximately 2.4 billion social networking accounts (Internet 2011 numbers, 2012).

According to the Pew Internet and American Life Project, 8 out of 10 internet users routinely search online for health information (Fox, 2011). A recent Google search for healthcare social media returned 349,000,000 results. The impact and influence of social media is quite powerful, and the general public needs to be thoughtful when considering the content and quality of information that is being provided on various internet-based social networking sites.

Review of the Literature

In the U.S., people seek healthcare for many different reasons.  While healthcare for an acute or chronic condition is the principal reason to seek care, many patients also request a care provider’s advice about maintaining their health, and ask questions about good nutrition, exercise programs, and other strategies to prevent disease  (Shorey, Spollen, Fletcher, & Sokol, 2012). Many patients want guidance as they turn to the internet for this health information (Diaz, Sciamanna, Evangelou, Stamp, & Ferguson, 2005).  A Harris Poll conducted in 2010 during a one month period found that 79 percent of American adults use the internet, and 62 percent of them looked online for health or medical information.. Many also use cell phones to search for health information, especially those ranging in ages 18 to 29 years (Fletcher, Fletcher, Aronson, & Sokol, 2012). A recent survey looking at information-seeking behaviors on specific social media channels identified WebMD as the most popular site for health information searches, with 48% of Americans visiting the site (Healthcare websites beat out social media as a health resource, 2012). Patients need to be aware and do their research when using social media for health and wellness information, as well as disease treatment choices.  A study completed by Health Research Institute found that 90% of people ages 18-24 generally trust the information they found on social media channels (Melin, 2012).

Experts reported that interoperability and standardization of the way in which data is collected and shared is essential for successful online health information exchange (HIE) (Nelson & Kosiorek, 2010). Access by underserved populations is also important, as individuals and families living in rural settings may not have as many ways (or any way) to access networks and evidenced based health information. Public kiosks that can provide access to health information are one venue that would allow those without access to gain better access to social media.

Access to social media impacts healthcare choices, leading peers to have more credibility, and can lead to enhanced treatment choices, answers to pertinent healthcare questions, and a higher level of comfort and/or knowledge with various health situations The Internet is typically the first resource utilized by the public when seeking healthcare. Social networking also provides and supports discussions on healthcare and healthcare processes. Social network sites such as Facebook and YouTube can be powerful platforms to deliver and receive healthcare information. In 2011, more than 80% of adults reported having used the Internet as a resource for assisting with healthcare decisions (Reid & Borycki, 2011).

Social media is an important venue that patients and caregivers use to access healthcare information. A vast amount of information is available in print and electronic media. However, this information is of variable quality, and it is often difficult for laymen to decide whether or not a particular source of information is credible (Fletcher et al., 2012).According to Gaulin (2011),  the accuracy of the information on healthcare and treatment being provided to patients through social networks are of concern There are worries that access to the Internet and social networking sites can possibly lead to harmful outcomes for patients when evidence-based resources are limited. The Cleveland Clinic Foundation analyzed the top most-viewed irritable bowel disease (IBD) related videos for content, popularity and patient education (Gaulin, 2011). The authors found that the content and information provided on YouTube about IBD, while popular, was not of a good quality.

Providers should recommend credible websites to interested patients as a means of improving their overall health. In addition, education of advanced practice providers now focuses on educating future physicians and advanced practice nurses in various health information technologies. HIT competencies empower medical students, physicians, residents (Triola et al., 2010), and advanced practice nurses (Fairchild, 2012) to be lifelong technology learners. However, HIT competencies have not yet been formally assessed among most providers, including patient/provider boundaries while using the social network websites.  A recent study shows that 73% of residents at Rouen University had Facebook profiles and 6% report getting friend requests from patients, with 4% accepting 9 (Ginory, Sabatier, Mayol & Eth, 2012).

Knowing the limitations and boundaries of the patient/provider relationship can be challenging at times, The American Medical Association (AMA) and American Association of Directors of Psychiatry Training (AADPRT) have taken actions to develop guidelines and educate about professionalism with the use of social media (Ginory et al., 2012). The American Association of Colleges of Nursing, published the Essentials of Baccalaureate Education for Professional Nursing Practice in 2008, requiring that information management and application of patient care technology become new core competencies for bachelor-prepared nurses (Johnson & Bushey, 2011). In 2009, the Technology Informatics Guiding Educational Reform (TIGER) also released a new set of recommendations for all practicing nurses and graduating nursing students to be able to demonstrate basic computer competency, information literacy and information management (Gugerty & Delaney, 2009).

Even though healthcare is still predominantly a face-to-face experience, many hospitals and other healthcare organizations are developing comprehensive marketing strategies involving social media, in order to reach out to computer-savvy patients and caregivers. For example, Innova Health System has created Facebook communities in specific interest areas such as wellness/fitness, pediatric care and bariatric surgery recovery (Boyer, 2011). Through greater access to healthcare in public and private locations, health information technology will be able to reach many individuals. Social media has leveled the playing field and patients can now communicate about any healthcare issue or concern at any time (Boyer, 2011). The website, “Patients Like Me” was launched in 2006 to capture the reporting of data for people with life changing diseases. This new way of testing treatments is speeding up patient recruitment in clinical trials (Brownstein, Brownstein, Williams, Wicks, & Heywood, 2009).

Described in detail below, the health-related social networking site developed by this doctoral nursing student cohort attempts to follow these creative examples of cutting edge, patient-centered HIT projects. The steps to design, development and launch of the site are described below, in a concerted learning effort to provide patients, families and caregivers the opportunity to search online for high quality healthcare information while also engaging in teaching-learning conversations, and retrieving and/or sharing evidenced-based health information.

Purpose of the Doctoral Project

The primary goal of the doctoral HIT project described here is to develop a social networking web site that provides increased access to evidence-based health information within the global community. The target audience is broad, and consists of men, women, the elderly, and parents of children, as well as healthcare providers. Given that healthcare consumers can come from every demographic region, it is important that user-friendliness be optimized for the broadly-defined audience (Ford & Huerta, 2012).

Overview of the Project

The Indiana State University (ISU) Health Web social networking site developed by a doctor of nursing practice cohort provides access to healthcare information, and a vehicle for patients to ask questions, and address healthcare issues. The ISU Health Web has been designed to encourage an open, collegial, informative environment via the presentation of frequently requested health/wellness topics and information, in addition to supporting online community discussions in response to members’ questions posted on common chronic illnesses and their treatments. Most aspects of the site are targeted to patients and families. At this time, access to the site is via email invitation only, in an effort to maintain website stability and prevent a major “hacking” event. Web administrators (the doctoral student cohort), nurse faculty members, and current patient and family members are encouraged to invite new members (peers, family, and friends) to login and join the site.

 Specific Project Objectives

Currently, web portals are moving away from providing institutional and administrative types of information towards a more interactive type of communication focused on providing patients services associated with health promotion and on facilitating access to healthcare services (D’Addario et al., 2011). Therefore, the doctoral students worked together via “virtual” planning meetings throughout the semester to coordinate, develop, and implement the web-based project. Members of the class were assigned to groups by course faculty (last author), and each week, a group presented topics to support the project’s progress in a timely manner.

Course Web Design:  Stages of Creative Development

The online vehicle for this project was NINGTM  . A collaborative process produced the layout, color and content of the website over a period of 15 weeks. NINGTM is the largest network for creating social websites (NINGTM social websites, 2012), and the popular social networking site provides technical support for the user. The website was supervised by course faculty, and the major course activities are outlined below:

Week 1): Introduction to NINGTM social network site by course faculty. Expectations and outcomes for the project were discussed and outlined.

Week 2): Team leaders discussed assigning clinical content for each web part.

Weeks 3): Team members decided upon clinical content and how the information would be disseminated. The design and layout of the website was continually revisited until the overall design elements were approved by the group.

Weeks 4 & 5):  Team members decided upon clinical content and topics that were specific to adult health. Responsibility for learning how to interact with NINGTM and adding web parts and other types of content were accepted by the first and second authors. The remaining doctoral team members continued to offer input as to layout and content of the site, and changes were made accordingly.

Weeks 6-8): Team members provided evidenced-based clinical content for uploading to the website. Data uploaded by 2 dedicated doctoral team members who became experts in upload processes and in online tab/section formatting. All doctoral team members reviewed the clinical content for additions, errors and omissions.

Weeks 8-12): The class requested feedback from colleagues, patients and family members who agreed to access and critically evaluate the ISU Health Web site. Eleven sets of narrative comments were received, and selected suggestions were incorporated into the site design. Overall, comments related to the website were positive, and an ongoing evaluation will occur through further surveys about user friendliness, content and functionality of the website.

The evaluation survey implemented was qualitative in nature, and used open-ended questions to gather respondent’s perceptions of the website. A future DNP cohort will be asked to conduct an evidence-based search and collaboratively design a new tool to more explicitly measure the effectiveness of the functionality of the site, so that the tool can be pilot-tested and refined accordingly. This type of survey development activity would be ideal for the cohort’s upcoming “Analytical Methods” doctoral-level course in Spring, 2013. In addition, future cohorts will be encouraged to develop and test mobile applications of the website, and their ease of use for patients and families can also be explored and evaluated.

Launch of the ISU Health Web project occurred in late May 2012, and the ISU Health Web is being maintained by the first and second authors. Grant-based funding is being pursued to support the doctoral student web administrators over longer periods of time. It should be noted that throughout the entire site development process, the course faculty met “virtually” with the doctoral cohort, and provided suggestions and comments pertaining to the content and layout of the website. The larger scale of this particular HIT project has also provided multiple opportunities for the faculty facilitator to incorporate learning methods and online modules that address the full spectrum of the nursing process at higher (application through synthesis) knowledge levels.  The facilitator has worked to challenge students to discover practical, evidence-based ways to assess, plan, analyze, and evaluate project variable outcomes for the website over extended periods of time.

Other academic entities have been invited to critique, as well as participate in the ISU Health Web, and the computer information technology (IT) department has been invited to join forces and talents with the DNP stewards of the site, in order to further enhance the site as it grows in membership. This type of scholarly project allows for an ideal intercollegiate, interdisciplinary collaboration across healthcare students and professions at the university.

Implications for Doctoral Nursing Education and Practice

Health information technology and social networking are viable ways for healthcare providers and patients to communicate and collaborate to provide competent, quality, cost effective, evidenced base medical care and treatments both locally and globally. Access to healthcare via this vehicle can be delivered at any time and location in the world. Experts can be reached for consultation and evaluations without physically stepping into an exam room.

The goals of the social networking project will continue to evolve and be reshaped, as future doctor of nursing practice students add their contributions to the ISU Health Web. Prioritizing and planning for the steps of each phase of site development have been discussed, and notes have been maintained to be passed on to the next doctoral cohort. While it is often difficult to assess whether all members of a group participated equally in a project, the authors believe that all members of the doctoral cohort contributed adequately based on each student’s particular talents and advanced practice specialties in nursing and health care.

Health information technology and social media have leveled the playing field, and now patients can research and find answers to health questions at any given time or day regardless of location (Boyer, 2011). This doctoral team hopes that the ISU Health Web will have far reaching implications for present and future users. Students, faculty and other healthcare community stakeholders will be able to access up-to-date information about health issues and various treatment modalities, as well as ask questions, and share answers, with a focus on evidenced-based content, and caring support.

Goals for future use of the ISU Health Web will be aimed at engaging the involvement of other health professions departments at the university, as well as external users (including advanced practice providers) who believe that this application could play a positive role in helping their patients obtain answers to medical questions and/or access information on health issues in a nonthreatening, private environment. Social technologies defy the financial, geographical and logistical barriers that exist to create a new context for ongoing interaction, collaborative learning, fast access to information, and transparency (Bacigalupe, 2011).

Interdepartmental and interdisciplinary involvement should make the ISU Health Web social network better for future users. Continuing to reshape and evaluate content and querying users regarding specific content they would like to see added to the site should make this interactive collaboration a useful tool for all users. Technology and the evolution of the internet play an increasingly important role in healthcare. Many patients utilize the internet as their first source of information. It is imperative that universities and healthcare organizations strive to present social networks and other health-related sites that are relevant, current and, above all, evidence-based in their approach to care.

Authors note: If the reader would like to gain access to ISU Health Web social networking site, please contact the first or second author.

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Author Bios

Ann McNeill DNP(c), MSN, FNP-BC, CCRC

Ann McNeill is a Family Nurse Practitioner in an express care clinic through Parma Community General Hospital. She has 20 years clinical experience as a registered nurse in the military, orthopedics, general surgery, pediatrics, acute psychiatry, neonatal intensive care, medical intensive care and home care. Ann as 3 years experience as Family Nurse Practitioner in rural health and retail clinics. She has helped set up a rural healthcare clinic. Ann has 5 years clinical research experience in heart and lung transplantation. Ann is currently a student in the DNP program at Indiana State University.

Andrea S. Underwood, DNP(c), FNP-C

Andrea Underwood is a Family Nurse Practitioner (FNP-C) in which she is certified through the American Academy of Nurse Practitioner (AANP). She is currently employed as a family nurse practitioner in the emergency department at Forsyth Medical Center in Winston-Salem, NC. She has 12 years nursing experience in the areas of Intermediate Care Unit, Contrary Care Unit, Post Anesthesia Care Unit, Emergency Department, National Surgical Quality Improvement Program, and Regional Anesthesia. Andrea’s career as a family nurse practitioner has been utilized in areas of family medicine, obstetrics and gynecology and emergency medicine. In addition to her clinic background in nursing, Andrea has been involved with many communities to improve surgical care including: Surgical Improvement-Preoperative Risk Factors, Six Sigma- DVT Prophylaxis, Surgical Services Improvement Project and the Six Sigma- Developer of Surgical Clinical Questionnaire to improve data collection among patients. Andrea is currently pursuing a Doctorate in Nursing Practice from Indiana State University (ISU) with a completion date of May, 2013. Andrea’s scholarly project at ISU is focused on the development of a weight management program for the rural middle age obese female. Andrea is currently working to complete her scholarly project with community leaders while improving the obesity epidemic by being involved as a instructor in the Eat Smart Move More Weigh Less program in Surry County, NC.

Amy Wisniewski, DNP(c), MSN, APRN

Amy Wisniewski, MSN, APRN has worked 8 years in critical care. Amy is a Family Nurse Practitioner and has 5 years of experience working in a family practice setting.

Susan Sitzenstock DNP(c), MSN, FNP-BC

Susan Sitzenstock is a Family Nurse Practitioner at Parma General Hospital in Parma, Ohio.  She also is a Home Health Nurse active in trach/ventilator cases. She has 11 years experience as a Nurse Practitioner and has worked in Outpatient Surgery, Preadmission Testing, Employee Health, and an outpatient retail clinic.  She has 18 years experience in med/surg nursing, rehab care, and skilled nursing.  Ms. Sitzenstock is a member of the Northeast Ohio Nurse Practitioners Group.  She is presently attending Indiana State University to obtain her DNP.

Roseanne Fairchild, PhD, RN, CNE, NE-BC

Dr. Roseanne Fairchild is Assistant Professor of Nursing at Indiana State University, and is a board certified nurse educator. She has 15 years experience as faculty in the areas of nursing administration, nursing education, health informatics, medical-surgical and critical care nursing, pharmacology, and anatomy and physiology.  In the clinical practice arena, Dr. Fairchild has 10 years experience in emergency and critical care nursing, traumatic brain injury, cardio-pulmonary nursing, and hospice/palliative care. In addition to teaching, Dr. Fairchild serves as a Principal Investigator in health services and educational research in rural and urban settings, with emphasis on supporting innovative improvements in health care quality, patient safety, and information technology from an inter-professional perspective. A current project funded by Lilly Endowment focuses on sustainability of best practices in rural critical access hospitals with colleague Dr. Ferng and Ms. Randi Zwerner. Dr. Fairchild is also involved in theory development in the areas of work motivation, ethical reasoning skills, and healthcare system complexity, and has several peer-reviewed publications in these areas. She currently serves as a member of the Board of Directors of the Indiana Rural Health Association and on the educational and research committees for IRHA, she is facilitator of an Inter-professional Education Research working group, and has recently been appointed by the Indiana State Health Commissioner as a member of the Executive Committee for Indiana’s State Health Improvement Plan.

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