- All team members (including me) operate off the same data set. This means that we know and agree what are the most important pieces of information about me (the minimum data set).
- That these pieces of information are collected somewhere, shared, merged, updated and corrected easily as needed.
- My health goals and plans to get there are explicitly stated.
- Able to track my progress to those goals.
- A safe, reliable way to communicate with my team members and my team members to communicate with me that works for me.
- A safe reliable way for team members to communicate with each other that gets recorded for me to see.
- Able to read, print, and transmit this information anywhere, especially somewhere unexpected outside my usual network-like an Emergency Room.
- Able to view notes my team members write about me.
What would I like to have?
- A description of how I react to pain and guidance for what works and doesn’t work to relieve pain for me.
- A description of how I react when scared and guidance for what works and doesn’t work to calm me down.
- Access to recommended places to get more information.
- Able to write notes with other team members or write notes myself that other team members can see.
My colleagues from the Society of Participatory Medicine, Peggy Zuckerman and Kathy Kastner have been orienting me to the vast world of health literacy. They tell me that the US Department of Health and Human Services defines health literacy as:
“The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”
The report continues:
“Health literacy includes the ability to understand instructions on prescription drug bottles, appointment slips, medical education brochures, doctor’s directions and consent forms, and the ability to negotiate complex health care systems. Health literacy is not simply the ability to read. It requires a complex group of reading, listening, analytical, and decision-making skills, and the ability to apply these skills to health situations.
Health literacy varies by context and setting and is not necessarily related to years of education or general reading ability. A person who functions adequately at home or work may have marginal or inadequate literacy in a health care environment. With the move towards a more “consumer-centric” health care system as part of an overall effort to improve the quality of health care and to reduce health care costs, individuals need to take an even more active role in health care related decisions. To accomplish this people need strong health information skills.
What are the skills we need for Health Literacy?
ePatients are often faced with complex information and treatment decisions. Some of the specific tasks people are required to carry out may include:
* evaluating information for credibility and quality,
* analyzing relative risks and benefits,
* calculating dosages,
* interpreting test results, or
* locating health information.
In order to accomplish these tasks, individuals may need to be:
* visually literate (able to understand graphs or other visual information),
* computer literate (able to operate a computer),
* information literate (able to obtain and apply relevant information), and
* numerically or computationally literate (able to calculate or reason numerically).
Oral language skills are important as well. [People] need to articulate their health concerns and describe their symptoms accurately. They need to ask pertinent questions, and they need to understand spoken medical advice or treatment directions. In an age of shared responsibility between physician and ePatient for health care, people need strong decision-making skills. With the development of the Internet as a source of health information, health literacy may also include the ability to search the Internet and evaluate websites.
Health literacy is a magic lever of best health.
Sometimes our health journey seems fraught with peril. So much can go wrong. Unexpected danger lurks around every corner. Yet, team members (caregivers, loved ones, professionals) accompanying us on our health journey all seek a safe ride for us and themselves. Safety is complicated. It begs many questions.
- What kind of safety – emotional, physical, or cultural? Personal, team or organizational safety? Absence of error, mishap or tragedy?
- What about the dynamic tension between risk and rights? We could feel absolutely safe with a trusted Big Sister always watching and protecting. How much of our human rights would we give up for that absolute safety?
- What role do we ePatient drivers play in our own safety? What role do our leaders organizations play in our safety?
- How is safety demonstrated? Surely part of safety is perception. Read More
Managing medications – the most frequent interaction between health team members – includes both the clinical aspects of our health journey and the behavior of health team members. Medication management that works depends on empowered, informed patients and their caregivers prepared for clinician visits, and engaged, collaborative clinicians skilled at working with activated patients. Unfortunately, current management is often haphazard, disorganized, time-consuming, and frustrating with a heavy dose of paternalism in complaints about lack of “patient adherence.” If managing medications worked better we could see better patient safety, improved health outcomes, and a positive impact on life flow and work flow. The challenge is so widespread and so fundamental. How can we systematically approach the opportunities in medication management to find the right tools and methods?