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Patients & Families Need Knowledge to Engage

November 8, 2013

A decade of caring for a critically ill child and another 13 years of patient safety and advocacy efforts have convinced me that access to even a small amount of information at the right time can completely transform a health care experience.

Why am I so sure?

 Because even as an educated health care provider, I struggled at the bedside to keep my child safe from harm. I understood most of the terminology that the doctors were using, I had knowledge of the disease process surrounding infection, and I considered myself to be an experienced advocate for my daughter. What I was lacking was a foundation of basic information. I didn’t understand the hospital hierarchy and who to ask for the answers and the help that we needed. I struggled to communicate effectively with my daughter’s providers and to function as a true member of her health care team. I remain convinced to this day that what I didn’t know at the time allowed additional, and preventable, harm to reach my daughter.  

 My work at The Empowered Patient Coalition helps ensure that patients and their loved ones feel informed and empowered when interacting with the health care system. I know from first-hand experience that a small amount of preparation goes a long way in supporting safe and successful health care outcomes. My husband and I struggled to find our own solutions during a life-threatening health crisis. We want others to learn from our experiences and avoid “on the job” training – because being prepared in advance can mean the difference between life and death.

 We have many resources for patients and families in a variety of formats. Our newest project is the free Empowered Patient app for both iphone and Android.  Our organization realizes that a significant number of people turn to their phones for health information- especially in a crisis or during an emergency. The Pew Research Center’s Internet & American Life Project recently released data showing that 56 percent of adults in the U.S. are smart phone owners. And it isn’t only young people who are choosing smartphones – people 65 and older are increasingly utilizing this technology. According to the Pew project, 18 percent of people ages 65 and older own a smartphone. Pew also reports that 72 percent of adults have looked up health information online in the past year. There is no doubt that the future of patient education and engagement is intertwined with phone technology and that it is vital to develop apps specifically designed for patients and caregivers.

The Empowered Patient app is simply the starting point for feeling informed and engaged that I wish I had had all those years ago. It’s time to stop expecting patients and caregivers to feel confident or empowered without first providing a foundation of basic information. We have to do the hard work of putting useful, appropriate information in the hands of patients and their advocates and then support them as they develop the skills and the confidence they need to move forward in partnership with their health care providers. It simply won’t work any other way. Our information provides a foundation or a blueprint for interacting with providers, making decisions, asking appropriate questions, and avoiding many of the inherent risks associated with health care interactions, such as infections, common medical errors, and miscommunication.

An unplanned admission often means that people need information quickly as they struggle to deal with the sudden, overwhelming complexities of inpatient hospital care. Many hospitals have Internet access, which allows people to do research without leaving the patient’s side. Information that is literally right at a person’s fingertips is both reassuring and empowering. And as challenging as hospitalization and surgery can be, routine office visits also present formidable challenges to patients. The Empowered Patient app addresses both inpatient and outpatient issues – from diagnosis to discharge and beyond. Our app gives patients, families, and caregivers resources, strategies, and the authority they need to step up to the plate and become empowered quality and safety partners.


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