This a speech and public comment on Meaningful Use Stage 2.

1. LONG STORIES:
The Story of Meaningful Use and Why the patient voice matters…
by Regina Holliday

2. “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 records
had been dammed behind a wall of bureaucracy & poorly understood HIPAA regulations.
HITECH and Meaningful Use would release the data to the patient.

3. 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.
73 cents per page
They were told it would cost
and there would be a 21 day wait to see the record.

4. Meanwhile,
Fred was a huge fan of
Stephen King.
Regina realized he might not
live to see the King‟s new
book
Under the Dome
printed 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Fred received an unpublished book by an A-List author in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.

5. 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.

6. Fred was sent by ambulance to another hospital
with anout-of-date and
incomplete paper copy of his
medical administration record
and
transfer summary.
He would wait painfully for6 hours
while the staff of the new hospital would cobble
together a new medical record using a
Telephone and a Fax machine.

7. The following day, Fred‟s new Doctors asked
Regina to return to the 1st hospital to get
a complete copy of the medical record.
She told them she had tried to get the record
but 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 ½
for the new doctors.

8. 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 access
on the city streets of Washington, DC.

9. June 11th, 2009Fred came home to home hospice care.
He died six days later on June 17th, 2009

10. This is the painting 73 cents.
This is the vital patient story, the social history , the sacred heart of Fred‟s
ELECTRONIC MEDICAL RECORD.

11. Meaningful Use Stage 1 final rule
Was announced on July 13, 2010.
There are 15 core measures
And a menu set of additional
measures that providers can
choose from.
Providers must fulfill the core
measures and additional menu
items to receive incentive funding.
This stage is often called the „carrot‟
part, of the carrot and the stick.

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

13. 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.

14. 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.

15. Daily at least7,500 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.

16. 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.

17. Secure messaging must
be supported in many forms.
It is important that patient
preferences
for communication are recorded
and that multiple types of
communication are available for the
various types of information.

18. Electronic health systems
must 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 Patients
In 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.

19. 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.

20. Disability status must be collected
in 80% of patients as a core requirement.
Many disabilities, such as autism, are not
readily apparent in the care setting but can
dramatically effect the care experience while
hospitalized and future self-care in the home.

21. 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.

22. 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 doctor
And 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