In healthcare today, great strides have been made to create technology that can aid patients and family members, as well as, the public at large in gathering health information, making personal health decisions and taking control of their options. As healthcare providers, it can be easy to believe that we should want the best for every patient, but the question becomes is every patient ready for “the best”? For those members of Generation X, Y and those that follow technology is not nearly as daunting and in many ways their willingness to adapt in an ever-changing technological environment makes them ideal test subjects for these same advancements.
Additionally, the extent to which they benefit from technological advancements in consumer health informatics is debatable as the ability to accurately discern valuable versus valueless information becomes a challenge. On the other hand there are Baby Boomers and those that are older who may benefit the most from technological advances, but are resistant to learn and try new things relative to their unfamiliarity. The challenge for healthcare providers is to take what we know about healthcare informatics and technology and integrate it with an assessment of a patient’s readiness and willingness to embrace that technology. How do we offer our patient’s “the best” and help them keep moving forward?
Finding a true and finite definition of consumer health informatics is formidable since the arena is ever expanding. The American Medical Informatics Association defines consumer health informatics as, …the field devoted to informatics from multiple consumer or patient views. These include patient-focused informatics, health literacy and consumer education. The focus is on information structures and processes that empower consumers to manage their own health–for example health information literacy, consumer-friendly language, personal health records, and Internet-based strategies and resources. The shift in this view of informatics analyses consumers’ needs for information; studies and implements methods for making information accessible to consumers; and models and integrates consumers’ preferences into health information systems. (American Medical Informatics Association, 2002)
This definition is concise in that it does accurately define the field, but it does little to accurately convey the scope of the field, as it is as diverse as the definition itself. An informal, random polling of people will demonstrate just how diverse even health related internet-based resources are and how preferences vary from person to person. Think about the last time you sought out health related information on the Internet and consider the thought process and choices behind the website that you chose. The options are endless and patients of all ages and backgrounds can easily become overwhelmed and feel inundated.
Now extend that same concept to unearthing information relating to a specific disease process and advancements in technology relating to the care and treatment of said disease process. For the purposes of this paper let us look at diabetes, continuous glucose monitoring (CGM) and insulin pump therapy. Both continuous glucose monitoring and insulin pump therapy represent cutting edge advancements in the treatment of diabetes. Diabetes is a disease that affects patients of all ages and therefore is useful in demonstrating the intricacies of consumer health informatics. A basic Google search for continuous glucose monitoring yielded reliable and current resources in the top five, including the diabetes specific website maintained by Medtronic, a leader in the field.
The Medtronic website is user-friendly and informative at the same time, but the diversity and volume of information enveloped in the website proves challenging for those with knowledge of the disease process, but there is additional factor of being knowledgeable about the technology as well. “Therapy Management Software allows you to upload your insulin pump, CGM device, and blood glucose meter data into a convenient web-based program,” which is convenient, but assumes a familiarity and knowledge base relating to different software. (Medtronic, Incorporated, 2011) While continuous glucose monitoring and insulin pump therapy mean the very best that healthcare professional have to offer a patient for treatment and control of diabetes it may not be the best decision for everyone.
Young diabetics may embrace technology like CGM and insulin pump therapy giving them freedom not previously felt with traditional insulin therapy and glucose testing and playing off their innate love of technology, while more mature patients may not be as embracing of the technology. The role of the health care provider then becomes not so much of the traditional healer role, but now more of an advocate and educator. The following, a quote related to nanotechnology, is just as easily be applied to CGM and insulin pump therapy, An obvious implication of this embedded technology is that it creates person-centered versus location-specific monitoring devices, crossing traditional boundaries of care in the hospital, home, physician’s office, work or even the local grocery store. This kind of monitoring transparency is unprecedented…For individuals with chronic diseases, a click of a computer mouse could send pertinent information, such as a glucose level beyond a pre-set threshold, to a clinician for prompt initiation of a customized treatment plan based on the individuals’ specific pathology. Or the nanoparticles could be programmed to administer medications without a clinician’s direct intervention. (McDaniel, Schutte, & Keller, 2008)
It is not always the case that technology is more burdensome than the alternative and the goal is to help inform patients of the alternatives while simultaneously stressing their benefits. In reality though, health care providers have to be willing to simultaneously assess the drawbacks for patients and when it comes to technology and aging we must be cognizant of comorbidity. In fact, we do patients a great disservice when we ignore comorbidity and push for a change they are neither capable of making, nor able to follow through with in the long term. The Consumer Health Informatics Research Resource “provides a resource of outcome variables and suggested measures to guide a comprehensive consumer health informatics assessment. The resource provides a reservoir of suggested outcome variables that make it easier to engage in health communication and related consumer health informatics intervention research.” (National Cancer Institute, 2010) Assessment factors such as age, exposure, habits, health information seeking, health literacy, spiritual health locus of control and many more are addressed. A brief definition is given of each factor, as well as, advice in how to address issues with patients.
The website is helpful in not only assessing those comorbid factors that we anticipate but also assists in identifying those that may be overlooked. How then do we measure success when it comes to consumer health informatics when the field is ever changing requiring constant adaptation by the provider and the patient alike and the fact that providers may be fighting ever-present adversity? The answer is to embrace the fluidity and become lenient and as yielding as we need to be as healthcare providers in order to provide the best for our patients. That and as one author states in reference to consumer health informatics, “the evolution and rapid growth of CHI resulted from wide-ranging social changes and technological advances. Traditional patient-provider roles have transformed from a paternalistic archetype, with healthcare professionals acting as gatekeepers of specialized knowledge and information, to a participatory model that encourages shared decision-making and a more equitable balance of power in the provider-patient relationship.” (Staggers, McCasky, Brazelton, & Kennedy, 2008)
Success may not be the final outcome that we, as health care providers desire, but rather a symbiosis of what is best for the patient and their needs and our desire to provide them with the best care. Healthcare professionals walk a tightrope when it comes to consumer healthcare informatics. If a patient, family member or caregiver initiates a conversation about advances in technology the battle is half won, but in introducing technology there is an inherent risk that, ultimately, trust can diminished or vanish entirely. While it is impossible to know everything about the newest technology available to health consumers it is essential to have a viable understanding of its foundation in an effort to insure trust. The next step is to join patients in their journey and accept that we must adapt to the process as much as we are asking patients and consumers to adapt and change.
American Medical Informatics Association. (2002, April 17). American Medical Informatics Association. Retrieved from AMIA: www.amia.org
McDaniel, A. M., Schutte, D. L., & Keller, L. O. (2008). Consumer Health Informatics: From Genomics to Population Health. Nursing Outlook , 56 (5), 216-226.
Medtronic, Incorporated. (2011, June 30). Medtronic Diabetes. Retrieved from Medtronic: www.medtronicdiabetes.com
National Cancer Institute. (2010, May 30). Informatics for Consumer Health: innovation through information sharing, funding, and dialog. Retrieved from Informatics for Consumer Health: http://informaticsforconsumerhealth.org
Staggers, N., McCasky, T., Brazelton, N., & Kennedy, R. (2008). Nanotechnology: the coming revolution and its implications for consumers, clinicians and informatics. Nursing Outlook , 56 (5), 268-274