Patients+Families waiting on data

Once some paperwork is done to get past HIPAA the rest is fairly automatic. The hospital's EHR becomes a PHR on the site. Communications are secured between members of your group and the caregivers.

There are two legs to real health reform, to cutting costs and improving results:

  1. Collecting the Data -- Electronic Health Records (EHRs) created by clinics and hospitals can help teach us what works, and lower transaction costs for everyone.
  2. Distributing the Data -- Personal Health Records (PHRs) owned by patients empower them to take actions that can keep them well and help them heal.

Down at the bottom of the second point lie sites like Patients+Families.

It bills itself as a "secure web-based hub where the family can hear directly from doctors and other healthcare providers on how their loved one is doing."

Short form. It's a support group.

No one goes into a disease process alone. There are families, and there may be close friends. Whenever someone is sick, little micro-communities form.

The person at the center of all this, the sick person, is supposed to manage communications within this micro-group. They are supposed to hear and understand what the doctor is saying, transmit all this to their loved ones, hear what their questions are, transmit them, rinse and repeat.

No one does this well. What usually happens is family members pound on the patient, misunderstand, go to the doctor, hit a brick wall.

I was lucky with my father, back in the 1990s. My older sister is a nurse. She was able to talk directly to everyone involved, understand them, tell the rest of us, keep everyone sane.

My wife was not so lucky this decade. Her only source of reliable information was her father, the patient. He was a very intelligent man, but as illness took him he became less-and-less capable of managing all this communication.

What happens for those who are unluckier still, whose beloved patients aren't as brilliant and wise as my later father-in-law, who want to help but run into the brick wall of the HIPAA law?

That's where sites like this come into play.

There is some paperwork involved. The papers get you over the HIPAA law, they authorize communication between caregivers and whoever is designated to be in your group.

But once that's done the rest is fairly automatic. The hospital's EHR becomes a PHR on the site. Communications are secured between members of your group and the caregivers. All messages stay on the site so there's no loss of control, no loss of personal data.

More important, you now have a way to communicate within the group, based on solid information about the patient. And the patient can talk back, directly or through the person closest to them.

Now you can give your patient proper coaching. Now you know their true situation. Now you can stop asking "what" all the time, and go about the business of providing support. When these basic questions don't have to be asked any more, other questions can be asked, and answered.

It's a good thing.

This post was originally published on Smartplanet.com

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