- 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.
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
Recently, Joan Vitello, Associate Chief Nurse at Brigham and Women’s Hospital, inspired me talking about ‘trust’ at a nursing leadership seminar. I’ve thought about it every day since. Trust is a magic lever of best health – for e-patients, caregivers, professionals, teams, and organizations. Trust accentuates the possibilities: Trust that I’m OK, however I feel. Trust in my team members – they have best health in their hearts, whatever’s in their minds. Health is a marathon – trust fuels the fire of persistence – keepin’ on. I’m not a religious person, but I’m spiritual. Trust = faith. Having multiple sclerosis I know if I don’t use it, I lose it. Takes many times longer to regain it, if at all. Trust is like that. Lose it and need a recovery plan with help.