LONG STORIES:The Story of Meaningful Use and Why the patient voice matters…

by Regina Holliday

“Give us our Dammed Data!”

In the spring of 2009, the HITECH Act passed as part of the ARRA stimulus bill.

The bill offered funds to providers that installed electronic medical record systems, but those systems had to be Meaningful.

A few lines within the original act referred to patient access. For too long patient recordshad been dammed behind a wall of bureaucracy & poorly understood HIPAA regulations.

HITECH and Meaningful Use would release the data to the patient.

In the spring of 2009, a patient named Frederick Allen Holliday, II would be hospitalized and diagnosed with Kidney Cancer.

He had no access to the electronic medical record containing his active summary of care.

After three weeks of without access, his wife Regina would ask for a copy of the EMR from the Medical Records Department.

They were told it would cost 73 cents per page

and there would be a 21 day wait to see the record.

Meanwhile,Fred was a huge fan of Stephen King. Regina realized he might notlive to see the King’s new bookUnder the Domeprinted in the fall.

She emailed a book buyer, who emailed the publisher, who emailed Stephen King.

Fred received an unpublished book by an A-List author in

one week using the power of online communication coupled with the kindness of strangers, yet he could not access his own medical record within his hospital.

After waiting 3 weeks in a hospital for treatment and access to the written record,

Regina and Fred were told on a

SATURDAY.

That Fred would be sent home on a PCA pump.

Fred was being sent home to die without ever having access to his own

electronic medical record.

They fought for transfer to another facility to get a 2nd opinion.

Fred was transferred 5 days later.

Fred was sent by ambulance to another hospital

with an out-of-date and incomplete paper copy of his

medical administration recordand

transfer summary.

He would wait painfully for 6 hours while the staff of the new hospital would cobble together a new medical record using a

Telephone and a Fax machine.

The following day, Fred’s new Doctors askedRegina to return to the 1st hospital to geta complete copy of the medical record.

She told them she had tried to get the recordbut was unable to access it.

They responded that access would not be a problem as she was acting as a

courier.The the 1st facility printed out the record in

1 hour and ½for the new doctors.

After the doctors read Fred’s record,they gave it to Regina saying it was safest with her.

If she had it Fred would get better care.

She read it in the next 3 hours.

It contained 13 medical errors and

actionable data that if accessed, in a timely fashion,would have extended and improved Fred’s quality of life.

Regina decided to paint about

patient data accesson the city streets of Washington, DC.

June 11th, 2009 Fred came home to home hospice care.

He died six days later on June 17th, 2009

This is the painting 73 cents.

This is the vital patient story, the social history , the sacred heart of Fred’s

ELECTRONIC MEDICAL RECORD.

Meaningful Use Stage 1 final ruleWas announced on July 13, 2010.

There are 15 core measuresAnd a menu set of additionalmeasures that providers can choose from.

Providers must fulfill the core measures and additional menuitems to receive incentive funding.

This stage is often called the ‘carrot’part, of the carrot and the stick.

Change is scary, but I ask you to brave and embrace these recommendations for stage 2

Meaningful USE

Patients and Family Caregivers should be able to view, download, and transmit their own electronic health information in a timely fashion,

ideally in real time,

but failing that, within

24 hours of the care episode.

Providers should fulfill requests for access at least 80% of the time rather Than the 50% of stage 1.

The electronic medical record should

be an open record. Patients and Family Caregivers should be able view labs,vitals, imaging reports, active care summaries, discharge summaries, doctor's progress notes, nurse’s progress notes, medical administration records and medical reconciliation reports.

Nothing about us without us.

Daily at least 7,500 patients complete the HCAHPS survey, let’s improve that number.

As of 2013,The Total Performance Score for Hospital VBP (Value Based Purchasing) will have two components

Clinical Process Domain, accounts for 70% of the Total Performance Score;

Patient Experience Domain, accounts for 30% of the Total Performance Score.

The HCAHPS survey questions should be part of of the data capture design of Meaningful Use.

As it is vital that

Family Caregivers are recognized as a legitimate part of the care team.

It is important that those who design the EHR and hospital workflows have strategies in place to utilize the skills and expertise of the family caregiver and accord them titles of respect and that inclusion should be recorded as

structured data.

We are more than the “next of kin” who picks up the box of belongings after a death.

Secure messaging mustbe supported in many forms. It is important that patient

preferences for communication are recorded and that multiple types of communication are available for thevarious types of information.

Electronic health systemsmust support the inclusion of patient generated data,patient medical reconciliation(what the patient is taking while at home),smoking status, and family health history.

The Patient Portal and

Clinical Decision Support for PatientsIn order to create patient measures that have equal weight compared to clinical measures, patients/caregivers must have access to the tools of data creation and capture.

Only then can we attain an equal footing.

Patients must be part of the data creation process from triage, through the entire episode of care culminating in a personal qualitative discharge summary.

There are some who wish to exempt

Behavioral Health care from a requirement for secure messaging.

These patients need access to their records and care team just as much as any other patient.

Disability status must be collected in 80% of patients as a core requirement.

Many disabilities, such as autism, are notreadily apparent in the care setting but can dramatically effect the care experience whilehospitalized and future self-care in the home.

ADVANCE DIRECTIVES: If we are dying, respect our final wishes.

It is horrific to fill out an Advance Directive alone in a hospital room with no help. It is wrong that this data, once created, does not easily follow the patient.

I ask that the collection of a Advance Directives be a core requirement of Stage 2.

This is Meaningful Use.These are the three hills we must climb.

These are the three ships that must sail.

Stage 1 is well underway with a doctorAnd a vender powerfully rowing.

Stage 2 is launching with a patient, a doctor, a nurse & 1 oar is in the water.

Stage 3 is still a ghostly promise of a better tomorrow.

I ask you to let us row together.

~ @ReginaHolliday