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Letter to the Editor

Informatics: Empowering ePatients to Drive Health Care Reform - Part I

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Ramona Nelson, PhD, BC-RN, ANEF, FAAN

Citation: Nelson, R., (September 13, 2016) "Informatics: Empowering ePatients to Drive Health Care Reform - Part I" OJIN: The Online Journal of Issues in Nursing Vol. 21, No. 3.

DOI: 10.3912/OJIN.Vol21No03InfoCol01

Historically, the American healthcare delivery system has rewarded providers for the number of patients seen and procedures performed. For example, seeing twice as many patients in a day resulted in more income for providers; and admitting more patients to a hospital enabled the hospital to collect more money. Today, the American healthcare delivery system is transitioning from a volume-based approach to a value-based approach. As this transition progresses, providers will be increasingly rewarded for the quality of care provided as measured by patient outcomes; ePatients are now one of the major force driving this transition. In this my first column (Part I of three columns on empowering ePatients), I will describe who ePatients are, introduce the reader to real ePatients and eCaregivers, and discuss how ePatients are being empowered to drive this transition.

Part I: Introduction to the ePatient

In 1955, Virginia Henderson first published her well-recognized definition of nursing. Early on Henderson defined nursing as “assisting the individual (sick or well) in the performance of those activities contributing to health, or its recovery (or to a peaceful death) that he would perform unaided if he had the necessary strength, will or knowledge. It is likewise the unique contribution of nursing to help the individual to be independent of such assistance as soon as possible” (Harmer & Henderson, 1960, p. 4). Implied in this definition, as well as many other definitions of nursing, is the idea that an educated professional nurse would be responsible for providing the care that a patient could not do for him or herself. To meet this responsibility, nurses have developed a systematic process called the nursing process.

Today, the role and responsibility of the nurse is changing. Healthcare is moving from a world where the educated, informed nurse offers services to patients who cannot meet their own healthcare needs to a world where the equipped, enabled, empowered, and engaged patient is becoming a peer, working together with nurses and other healthcare providers in identifying their healthcare needs. The final decision about how these needs might best be met is being placed in the hands of the patient. In truth, patients were always supposed to be in charge of meeting their needs; this is one of the reasons there are so many permission forms in healthcare. In this first column (Part I) in this three-part series on empowering ePatients, I will explain who/what e-Patients are, introduce the reader to real ePatients and eCaregivers, and explore the concept of empowered ePatients and eCaregivers.

What is an ePatient?

In today’s lexicon there is a long list of eWords, for example, eHealth, eMail, eShopping, and eLearning. The small e in front of the term is used to denote that the object or activity exists or is occurring in electronic format in an online environment. However, use of the term ePatient precedes many of these terms. Tom Ferguson, who began studying and writing about the ‘empowered medical consumer’ in 1976, while he was still a medical student at Yale (Thomas, 1978), coined the term e-Patient. He defined e-Patients not as electronically connected, but rather as equipped, enabled, empowered, and engaged in their health and healthcare decisions. (Society for Participatory Medicine, n.d.).

Since Ferguson first coined this term, its meaning has continued to evolve and expand. For example, the Stanford Medicine X ePatient Program has now defined an ePatient as follows:

ePatient (e·pa·tient/e‘pāSHənt/): 1. A health consumer who uses the Internet to gather information about a medical condition of particular interest to them, and who use [sic] electronic communication tools (including Web 2.0 tools) in coping with medical conditions. 2. Friends and family members (e-Caregivers) who go online on behalf of patients (Stanford Medicine X, 2014, para 3).

As the meaning of the term has expanded, some ePatients have developed a high level of expertise and in turn have taken a leadership role within the ePatient movement. The Stanford Medicine X ePatient Program has coined the term ePatient scholar to describe these leaders thus:

ePatient scholar (e·pa·tient schol·ar, /e‘pāSHənt ’skälər/): 1. A specialist and expert who is highly educated in his or her own medical conditions and who uses information technologies (e.g., Internet tools, social networks, self-tracking tools) in managing their [sic] health, while learning from and teaching others. 2. An educator and role model for other patients and healthcare stakeholder (Stanford Medicine X, 2014, para 5).

In summary, an ePatient is one who is empowered and engaged in healthcare decisions. An eScholar is a specialist and/or educator who uses information technologies to manage health status.

Examples of ePatient Scholars

The leaders introduced below demonstrate what equipped, enabled, empowered, and engaged patients can and will do to gain a proactive role in managing their healthcare. They demand ‘Give me my own damn data’ and even point out that the data are often dirty. They call attention to the reality that the only way we as nurses and other healthcare providers can heal healthcare is to let patients help. Such ePatient leaders do not seek to replace us as healthcare providers or our key role in meeting their healthcare needs, but rather they seek to be our colleagues; clearly at this point we need their help.

David deBronkart. In early 2007 David deBronkart (deBronkart, n.d) was diagnosed with Stage IV, Grade 4 renal cell carcinoma. His disease had spread to both lungs, several bones and muscle tissue. With a mean survival time of 24 weeks his prognosis was described as ‘grim.’ Today Dave is a major player in a revolution demanding an environment where patients are provided the opportunity to be empowered and engaged in managing their health. David’s story is compelling because he, with the support of his personal care provider (PCP), was able to get access to his medical information and to information about healthcare options that literally saved his life. Today he is disease free. His story is also compelling because he has used his experience to speak out and change a healthcare system that has historically denied patients the very information they need to survive. Take a few minutes to read about Dave and what he has to say at his web site. The web site is listed in the reference list below (deBronkart, n.d.).

Regina Holliday. Frederick Allen Holliday, II, PhD, 39, of Washington, DC, died Wednesday, June 17, 2009. He is survived by his wife, Regina S. (McCanless) Holliday and two young sons (EnidNews.com, 2009). Nurses understand the pain and suffering for everyone involved that is inherent in these two sentences from this young father’s obituary. But in most cases we do not immediately think about the pain and suffering that could have been and should have been prevented. Regina believes that if Fred had had better access to his medical records, he would have gotten better care. No one is disagreeing. Six days after Fred died Regina began painting the story of her husband's experience on a gas station wall in a residential neighborhood (EnidNews.com, 2009). The picture is full of symbols. For example, a nurse sits at a computer with the dark screen, because records aren’t shared with patients. The doctor’s hands are tied because one part of the healthcare system doesn’t communicate with others (Shapiro, 2009/2013).

Like David, Regina went on to become a voice impacting the healthcare system. She established the:

(a) Regina Holliday's Medical Advocacy Blog: A place where art, medicine, social media and pop-culture collide and create a patient voice in health information technology, and

(b) Walking Gallery, which is made up of business jackets with individually designed art work portrayed on the back of the jacket. Each jacket uses representational imagery to create a patient-centric narrative. The owner of the jacket becomes a ‘Walker’ wearing the jacket to medical conferences in order to share “the patient story to a large group of policy-minded attendees and to represent the individual patient voice in venues where they are underrepresented” (Holliday, n.d.). As of September 2016, there were over 439 jackets in the Walking Gallery (Holliday).

Again, I suggest you visit her web site, which is included in the reference list below (Holliday, n.d.); see some of the jackets, and watch for a ‘Walker’ at your next conference. David and Regina are just two examples of ePatients or eCaregivers who are leaders in the ePatient movement. Additional examples are provided in the Table.

Table. Example of Work by ePatient Scholars

Ask Manny Hernandez

http://askmanny.diabetesblogs.com/

Center for Advancing Health

http://www.cfah.org/jessie-gruman/

Friends Against Lupus

https://www.facebook.com/AgainstLupus

Journeying Beyond Breast Cancer

http://journeyingbeyondbreastcancer.com/

Kidney Cancer Canada

http://www.kidneycancercanada.ca/

Postpartum Progress

http://www.postpartumprogress.com/about

What is Empowerment?

The word ‘empowerment’ comes from the word power and speaks to the process of giving individuals the power to make decisions and influence outcomes. The World Bank (2011) has defined empowerment as “the process of increasing the capacity of individuals or groups to make choices and to transform those choices into desired actions and outcomes.” The definition clearly fits with the concept of an ePatient. The World Bank goes on to identify the four key elements of empowerment as:

  • Access to information
  • Inclusion and participation
  • Accountability
  • Local organizational capacity (The World Bank, 2011)

In other words, if patients are to be empowered to make effective, quality decisions, they must first be provided full access to all of their personal health information. Without information that is relevant, timely, and presented in forms that can be understood, it will be impossible for people to take effective action (The World Bank, 2011).

Part I: Conclusion

Over 20 years ago, I started using an off-the-shelf software package to maintain my financial data. The data fields in the package are populated with data from several different institutions, including, for example, several banks, an investment management company, my employer, the federal government (social security) and others. In most cases, I have the option to update my records from the different institutions at any time by downloading these data directly into the software. I could maintain this same data on paper, but my personal preference is the use of a software package. Either way I have a comprehensive record of my finances.

I am very grateful that our financial systems do not function like our healthcare system. While I do try to maintain a comprehensive personal health record (PHR), the truth is my health records are spread over several institutions, from doctors’ offices to hospitals, and no one including myself has a comprehensive record. The financial institutions are proactive in making updated information available on a regular basis. Sometimes these reports are sent monthly while other reports are provided on a quarterly basis; but in each case I never have to request the report. In healthcare, I often must request each report and then wait up to 30 days. Fortunately, over the last few years my access to my healthcare information has been improving. One of the key driving forces in the United States for patients’ and their caregivers’ access to their personal health information is the federal government. Selected information access, and in turn patient empowerment-related activities initiated by the federal government, will be the topic in Part II of this series.

Author

Ramona Nelson, PhD, BC-RN, ANEF, FAAN
Email: ramonanelson@verizon.net

Dr. Nelson holds a baccalaureate degree in nursing from Duquesne University, and master’s degrees in both nursing and information science, as well as a PhD in education, from the University of Pittsburgh. Prior to her current position as President of her own consulting company, she was Professor and Chair of the Department of Nursing at Slippery Rock University in Pennsylvania. In the early 1980’s, one of Dr. Nelson’s employee benefits, while teaching at the University of Pittsburgh, was the opportunity to take university courses for only $5.00 a credit. After taking courses in computer assisted instruction and theory for information science, she recognized these tools (computers) just might be somewhat useful at the bedside and in the classroom. She has been exploring and discovering just how useful they can be ever since.

Dr. Nelson’s more recent research and publications focus on the specialty area of health informatics. Her latest book, Health Informatics: An Interprofessional Approach (2014), co-authored with Nancy Staggers, received the first place American Journal of Nursing Book of the Year award for Information Technology/Informatics. It continues today as a primary textbook in the field of health informatics. Based on her contributions to nursing and health informatics she has been inducted into both the American Academy of Nursing and the first group of fellows in the National League for Nursing Academy of Nursing Education. She has also been recognized as a pioneer within the discipline by the American Medical Informatics Association. Her goal in serving as Editor of OJIN’s Informatics Column is to open a discussion about how we as nurses in the inter-professional world of healthcare can maximize the advantages and manage the challenges that computerization bring to our practice.

References

deBronkart, D. (n.d.). About: e-patient Dave - A voice of patient engagement. Retrieved from http://www.epatientdave.com/about-dave/

EnidNews.Com (2009). Obituaries: Frederick Allen Holliday II. Retrieved from http://obituaries.enidnews.com/story/Frederick-Holliday-1970-2009-746622472

Harmer, B., & Henderson, V. (1960). Textbook of the principals and practice of nursing. (5th Ed). New York: Macmillan Company.

Holliday, R. (n.d.). Regina Holliday's medical advocacy blog. Available: http://reginaholliday.blogspot.com/

Shapiro, J. (Published November 9, 2009; Updated June 6, 2013). NPR: All Things Considered. Retrieved from A Widow Paints A Health Care Protest: http://www.npr.org/2009/11/09/120028213/a-widow-paints-a-health-care-protest

Society for Participatory Medicine. (n.d.). About us. Retrieved from http://e-patients.net/about-e-patientsnet

Stanford Medicine X. (2014). 2014 Stanford Medicine X ePatient scholarship program information. Retrieved from http://medicinex.stanford.edu/2014-stanford-medicine-x-epatient-scholarship-program-information/#about

The World Bank. (2011). Empowerment. Retrieved from http://go.worldbank.org/S9B3DNEZ00

Thomas, K. (1978, May/June). Tom Ferguson: Publisher of the magazine medical self-care. Retrieved from at http://www.motherearthnews.com/natural-health/tom-ferguson-zmaz78mjzgoe.aspx


© 2016 OJIN: The Online Journal of Issues in Nursing
Article published September 13, 2016

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