My presentation of the patient perspective as a member of the Public-Private Partnerships for Improved Patient Engagement panel

1. Ideas expressed during Looking Forward to the Next Frontier in Public Private
Collaboration to Promote Patient Engagement, a Healthcare Unbound 2013 Panel
HURDLING
TOWARDS
ACCESSIBLE
PORTABLE
PATIENT DATA
FOR ALL
12 July 2013
Alisa Hughley, MPH
Principal, enBloom Media
@enbloommediaBy Richard Gwin

2. I’ve managed
chronic illness my
entire adult life, but
it wasn’t until the
death of my
brother, Carey
Hughley, III that I
began to advocate
for patients…
advocate for
myself.

3. It was too late for him, but it’s
not too late for me.
I decided to pursue newer treatments available through
clinical trials

4. …with your medical records in hand.
You’ve met the preliminary
inclusion criteria for this study.
When can you get here?

5. FINISH LINE:
Consolidate medical records into
electronic form.

6. CRITERIA FOR MU STAGE 2
WOULD BE IDEAL
TRANSMIT
DOWNLOAD
VIEW
ACCESS
But it’s 2012, not 2014!

7. HURDLE #1:
TIMELY ACCESS

8. 7-10 BUSINESS DAYS TO
PROCESS
HIPAA IN THE 20TH CENTURY…
Comments from recent tweet
chat echo similar experiences.

9. VIEWING, A VIABLE OPTION…
UNLESS
STRATEGY: Viewing the
record & make notes of
the important stuff, until I
receive my copy.

10. I’d like to obtain the records for
care I received here in 19…
No. They won’t be available for viewing
today. They are archived offsite.
(If you’re lucky.)
(Seriously? You really want stuff from before Y2K!)

11. PROGRESS TOWARDS MEANINGFUL
USE VARIES
Georgetown University http://flic.kr/p/8h89vn
UNC Health Care by shadle http://flic.kr/p/4hoKon
Piedmont Healthcare http://flic.kr/p/cAyRsq

12. Medstar Georgetown
University Hospital
Inpatient
Partial Hospitalization
Physician Practice
Sleep Lab
Digital PDF or
Print & complete
ACADEMIC
MEDICAL CENTER
A copy of this signed authorization must be given to the individual.
v.10.19.05
General Medical Records Release and
Authorization for Use or Disclosure of Protected Health Information
Please complete the following information:
Patient Name: _______________________________________________________________
Address: _______________________________________________________________
_______________________________________________________________
Phone: _______________________________________________________________
SSN: ____________________________________Date of Birth:_____/_____/_____
I authorize the custodian of records of: or other person/entity (specifically
describe) to disclose/release the following information* (check all applicable):
 All records
 Laboratory/pathology records
 X-ray/radiology records
 Billing records
 Abstract/Summary
 Pharmacy/prescription records
 Other (describe specifically)
*Note: If these records contain any information from previous providers or information about HIV/AIDS status, cancer diagnosis,
drug/alcohol abuse, or sexually transmitted disease, you are hereby authorizing disclosure of this information.
These records are for services provided on the following date(s):
Please send the records listed above to (use additional sheets if necessary):
Name: _________________________ Name: ___________________________
Address: _________________________ Address:___________________________
_________________________ ___________________________
Phone: _________________________ Phone ___________________________
Fax: _________________________ Fax: ___________________________
The information may be used/disclosed for each of the following purposes:
 At my request (only the patient can check this box)
 For my health care
 For payment/insurance
 For employment purposes
 Other:
This authorization shall expire no later than: ___/___/___ or upon the following event ________________________
(whichever is sooner), and may not be valid for greater than one year from the date of signature for Maryland medical
records.
I understand that after the custodian of records discloses my health information, it may no longer be protected by federal
privacy laws. I further understand that this authorization is voluntary and that I may refuse to sign this authorization. My
refusal to sign will not affect my ability to obtain treatment; receive payment; or eligibility for benefits unless allowed by
law. By signing below I represent and warrant that I have authority to sign this document and authorize the use or
disclosure of protected health information and that there are no claims or orders pending or in effect that would prohibit,
limit, or otherwise restrict my ability to authorize the use or disclosure of this protected health information.
____________________________________ __________________________________
Signature of patient (or patient’s Date
personal representative)
____________________________________ __________________________________
Printed name of patient representative Representative’s authority to sign for patient, (i.e parent,
guardian, power of attorney for healthcare, executor)
You have the right to revoke this authorization, except to the extent the custodian of records has relied on it, by sending your written
request to the Privacy Liaison, 3800 Reservoir Road, N.W. Washington, DC 20007.
STRATEGY: Start with major
care events at academic
medical centers

13. Medstar Georgetown
University Hospital has
decentralized request
locations:
Outpatient clinic in
individual department
Film library
All other request
centralized
ACADEMIC
MEDICAL CENTER

14. 101 Manning Drive
Chapel Hill, NC 27514
AUTHORIZATION FORM – MIM #710-S
For Radiology Films please send:
ATTN: IMAGING SUPPORT
(919) 966-3280, Fax (919) 966-4990
For all other record requests please send:
ATTN: RELEASE OF MEDICAL INFORMATION
(919) 966-2336, Fax (919) 966-6295
Email: relmedinfo@unch.unc.edu
I authorize:
UNC Health Care System OR Other facility:
To use or disclose to:
Name of Person or Facility:
Address, City, State, Zip
Phone: Fax: Email:
The protected health information of:
Patient Name: Birth date: SS# (last 4):
Address: City, State, Zip
Phone: UNC Medical Record #
Dates of Service: __________________________
Put a CHECKMARK next to the specific documents that apply to your request:
Clinic notes (outpatient) Operative / Procedure notes Progress Notes (inpatient)
Emergency Dept. notes Providers Orders Radiology reports
Urgent Care Center notes Nursing notes Patient Billing records
History and Physical Consultations Film / CD (Imaging support)
Discharge Summary Laboratory reports All Medical Records
Other (describe)
Put your INITIALS next to any SENSITIVE information that pertains to your request.
NOTE: Initial only the boxes below that are applicable. Do NOT initial “Not Applicable” unless none of the
first 4 boxes apply.
Mental
Health
Drugs or
Alcohol
HIV / AIDS or other
communicable diseases
Genetic
Testing
N/A
Put a CHECKMARK next to the purpose of the request:
Attorney/ Legal
Personal Use
Continued Patient
Care
Social Services/
Disability
Insurance
Other:
HD 555 Rev 05/07 , 08/08, 10/10 , 4/11 Chart Location: Authorizations
UNC Health Care
Student Health
Practice Group
Print PDF &
Complete form
Record release
Record changes
ACADEMIC
MEDICAL CENTER
UNC HEALTH CARE SYSTEM
101 Manning Drive, Chapel Hill, NC 27514
(919) 966-2336 Fax (919) 966-6295
REQUEST FOR CORRECTION/AMENDMENT OF PROTECTED HEALTH INFORMATION
Patient Name: __________________________________UNC HCS Medical Record #____________________________
Patient DOB:_____/_____/_____Social Security # (voluntary):___________________Telephone: (____)________________
Patient Address:_________________________________City:______________________State:_____Zip Code:___________
Treatment Dates:______________________________________________________________________________________
Type of Entry to be amended: ________________________________________________________________
Date of Entry to be amended: ________________________________________________________________
Please explain how the information is incorrect or incomplete. Include the information that you feel should be included in
order to make the record more accurate or complete.
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
Would you like this amendment sent to anyone to whom we may have disclosed the information in the past? If so, please
specify the name and address of the organization or individual.
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
I understand that this amendment request will become a part of my designated record set. I also understand that this request
is subject to the review of a medical provider who will use his/her professional judgment as to whether or not my record
should be amended.
____________________________________________________ ____________________________________
Signature of Patient or Authorized Representative Date
UNC HEALTH CARE SYSTEM INTERNAL USE ONLY
Date Received________________________________ Accepted Denied
If denied, check reason for denial:
PHI was not created by UNC HCS PHI is not part of the patient’s designated record set
PHI is not available for inspection as permitted by Fed. Law PHI is accurate and complete
Comments: __________________________________________________________________________________________
____________________________________________________________________________________________________
____________________________________________________________________________________________________
Patient was informed of amendment or denial
_____________________________________________________ ____________________________
Signature/Title of Staff Member Date
______________________________________________________ ____________________________
Signature of Healthcare Provider Date
2/03 Original-Medical Record Yellow-Patient

15. MEANINGFUL USE STAGE 1
@Regina Holliday is a highly
effective patient advocate and
healthcare blogger who joined in
the discussion after seeing she had
been mentioned.

16. RECORDS REQUESTED: 7/31/12
STRATEGY: Made request in person without
prior appointment. Hoped to at least, to
review record & decrease processing time.
HIPAA IN THE 21st CENTURY…good.

17. RECORDS RECEIVED: 8/2/12
Received record in 3 days!

18. INDUSTRY FAVORITE IN eDelivery

19. eDELIVERY: ACESS, VIEW, DOWNLOAD…

20. MEANINGFUL USE STAGE 2
Welcome to myUNCHealthLink
TM — a free online service provided by
UNC Health Care. Now you can have convenient access to your personal
health care information in a secure online environment.
You can use myUNCHealthLink to:
Pay and manage your UNC Physicians & Associates or
UNC Hospitals bills securely and online
View all your scheduled and past appointments
Reschedule or cancel any scheduled appointments
Request new appointments for select clinics
Send a question to UNC Health Care staff members
from the secure Message Center
Thank you for choosing UNC Health Care.
www.myunchealthlink.org
Patient User Guide v.1.0
HIPAA in the 21st Century
…better

21. BUT…
Meaningful Use Stage 1 (or 2) is only the
reality at some hospitals.
(It’s time for the reality check: all tracks are not the same.)

22. FAX & TRADITIONAL MAIL STILL
WIDELY USED
@anetto is a healthcare blogger based in Canada
who focuses on chronic disease, Sjogren's and
Rheumatoid Arthritis. An empowered patient who
regular participates in #HCHLITSS tweet chats.
The not so good…

23. PRIVATE COMMUNITY
HOSPITAL
35256P Rev. 10/12
Authorization For Use/Disclosure of Protected Health Information
PATIENT INFORMATION
The following information is needed to assist the provider in locating the patient’s records:
Patient full name: SSN: Date of birth:
Maiden/other name: Current address:
Patient phone # (home): (work): (cell):
REQUEST AUTHORIZATION
I hereby request and authorize Health Information Management at (choose all applicable):
Piedmont Atlanta Hospital 1968 Peachtree Road, NW, Atlanta, GA 30309 Phone: (404) 605-3280 Fax: (404) 605-1555
Piedmont Fayette Hospital 1255 Highway 54 West, Fayetteville, GA 30214 Phone: (770) 719-7053 Fax: (770) 719-6821
Piedmont Heart Institute 275 Collier Road Suite 500, Atlanta, GA 30309 Phone: (404) 605-5570 Fax: (404) 355-4739
Piedmont Henry Hospital 1133 Eagle’s Landing Parkway, Stockbridge, GA 30281 Phone: (678) 604-5844 Fax: (678) 604-5076
Piedmont Medical Care Corporation 2727 Paces Ferry Road Suite 1-1100, Atlanta, GA 30339 Phone: (770) 801-2550 Fax: (678) 244-8201
Piedmont Mountainside Hospital 1266 Highway 515 South, Jasper, GA 30143 Phone: (706) 301-5455 Fax: (706) 301-5353
Piedmont Newnan Hospital 745 Poplar Road, Newnan, GA 30265 Phone: (770) 400-4181 Fax: (770) 304-4218
Other:
(initial)
To provide copies of my records checked below to:
Name (receiving person/party): Fax #:
Address:
Phone #: (required to verify Fax #)
(initial)
To permit review of my records checked below by (person’s name):
(initial)
To use/disclose PHI as described:
This authorization applies to records or PHI access from the following date or dates of service:
PURPOSE OF DISCLOSURE
At the request of the individual (patient)
For a marketing function for which a Piedmont Provider receives direct or indirect remuneration from a third party.
Other:
DESCRIPTION OF INFORMATION TO BE RELEASED
Psychotherapy notes – Federal law requires a separate authorization to use or release psychotherapy notes.
If you check this box, you may not check another box below.
Entire Medical Record Emergency Room Record Pathology Slides/Blocks Financial Record
Abstract of Record* Cardiac Cath Report/CD Radiology Films/CD
Other – Specify:
*An abstract of the record includes the History/Physical Report, Operative, Consultation and Discharge Summary Reports, and diagnostic test results.
SPECIAL AUTHORIZATION (IF APPLICABLE)
Patient
Initials
Parent /
Guardian
Initials
If you are authorizing the above entity(ies) to release information related to the testing, diagnosis, and treatment for any of the
following conditions, sign your initials in front of the section which describes the type of information to be released.
(initial) (initial)
My evaluation, testing, diagnosis, and treatment for alcoholism and/or drug abuse or dependence may be released to the recipient noted
on this authorization.
(initial) (initial)
My evaluation, testing, diagnosis, and treatment concerning my mental health/rehabilitation information may be release to the recipient
noted on this authorization.
(initial) (initial)
My testing, diagnosis, and treatment for HIV/AIDS may be release to the recipient noted on this authorization.
AUTHORIZATION SIGNATURES
I understand that the information used or disclosed pursuant to this Authorization may be subject to re-disclosure by the recipient of the information and may then
no longer be protected by the federal privacy regulations. I understand that unless otherwise limited by state or federal regulations, I may revoke this Authorization
at any time by presenting my revocation in writing except to the extent that the entity identified above has taken action in reliance on this Authorization.
A revocation form may be obtained from Health Information Management. The completed revocation must be presented to Health Information Management.
I further understand that this Authorization is specific to the information checked above, for the date(s) of services indicated, and for the purpose written above.
Piedmont Providers shall not condition treatment on the receipt of this Authorization, except when such conditioning is permitted for research-related treatment or
in instances where the sole purpose of creating the health information is for disclosure to a third party (for example, fitness-for-duty exams).
I further understand that this Authorization is valid for a period of 90 days from today’s date and will expire at that time unless another date is written
here:
Patient or Legal Representative signature Please PRINT name Today’s date
As Legal Representative, my relationship to the patient is . Any document proving such authority must be attached.
The patient is unable to sign because: .
NOTE: There may be fees for provision of any or all requested information. Under most circumstances, the law permits up to 30 days for record requests to be
processed, however records for treatment purposes can be immediately faxed to the patient’s healthcare provider when requested.
Piedmont Healthcare
(Atlanta, GA)
Emergency Room
Print PDF & Complete
form
The fine print says…
processing request may take
up to 30 days or record can
be FAXED to another
healthcare provider sooner.

24. Ridgeview Institute
(Smyrna, GA)
Inpatient
Partial Hospitalization
Release of information
form not easily available
on website
FAX is the primary
delivery mode
PRIVATE
REHABILITATION
CENTER
RIDGEVIEW INSTITUTE
REFERRAL SOURCE INFORMATION SHEET
3995 South Cobb Drive
Smyrna GA 30080
Assessment: 770-434-4568 EXT: 3200
Fax to: 770-431-7040 Attention: Access Center
For the safety and best interest of your patient, please call the Access Center at 770-434-4568 ext 3200 to verify
bed availability before faxing this information. Please note that we can accept this form only via fax. We cannot
accept any electronic versions of this form sent via email or scanned and sent via email due to patient privacy
concerns.
REFERRAL SOURCE INFORMATIONREFERRAL SOURCE INFORMATION: (please provide your contact information here)
Name:__________________________________________________ Agency:______________________________________________________
Address:_______________________________________________________ City:__________________ State:_______ Zip:_______________
Phone:_________________________________ Fax:_______________________________ Other Number: _____________________________
Should we call you after the assessment? Yes No Direct contact number: __________________________________________
**PLEASE NOTE THAT IN ACCORDANCE WITH HIPAA REGULATIONS, IF THE PATIENT DOES NOT SIGN OUR RELEASE OF INFORMATION
FORM, GIVING US PERMISSION TO CONTACT YOU, WE WILL NOT BE ABLE TO DO SO**
Level of care request*: _________________________________________________________________________________________________
*Final level of care determination will be made by the attending physician after the assessment has been completed.
Physician request(s): __________________________________________________________________________________________________
If your patient is admitted, would you like to be involved in his/her treatment here at Ridgeview? Yes No
PATIENT DEMOGRAPHIC INFORMATION: (please provide as much information about the patient as possible)
Patient Name:________________________________________Sex:____Age:____DOB:_________________SS#_________________________
Phone (Home): __________________________________________ (Cell): ________________________________________________________
Address: ______________________________________________ City:____________________ State: ______ Zip:_______________Co:_____
Emergency Contact Person: __________________________________________________ Relationship to Pt.: __________________________
Phone (H): ___________________________________ (C): _____________________________________________________________________
Legal Status of Patient: Voluntary Involuntary: ______________________________________________________________________
If Child/Adolescent: Who has legal custody? _______________________________________________________________________________
Does someone else have Healthcare Power of Attorney or Guardianship of this patient? Yes No
If yes, name of person who is the patient’s guardian or POA: ________________________________________________________________
PATIENT INSURANCE INFORMATION: (please provide as much information about the patient’s insurance as possible, and fax us a
copy of insurance card if available)
Insurance Carrier(s)_______________________________ Policy #:____________________________ Group #___________________________
Name of Subscriber:_______________________________ DOB of Subscriber:_____________________ SS#____________________________
Relationship to Patient:_________________ Employer:__________________________ Verification Phone #:____________________________
Other phone numbers on insurance card: __________________________________________________________________________________
(I could not find it.)
STRATEGY: Capture this information from summary
of academic medical center MD who consulted
with providers at this smaller hospital.

25. By Benjamin Miller
HURDLE #2:
FINANCIAL
ACCESS

26. FEES FOR MEDICAL RECORDS
You’ve got to pay to compete in the race.
@nursefriendly is a Registered Nurse
who is very active on many social
media channels and regularly
participates in the #HCHLITSS chat.

27. WHAT IS A NOMINAL CHARGE?
2 61pages
I could afford the fee, but what about those on disability,
Medicaid, Medicare and with very large records?

28. PATIENTS & CAREGIVERS ALSO
COORDINATING CARE
Should there be any exceptions?

29. HURDLE #3:
KNOWLEDGE
OF THE
SYSTEM &
POLICIES
This applies to those who
work within the system too.

30. Tell us all the prescription drugs
taken from the time of the initial
diagnosis until now?
Oh and by the way, what were the
dosages?

31. CRITERIA FOR MU STAGE 2
WOULD BE IDEAL
TRANSMIT
DOWNLOAD
VIEW
ACCESS
But it’s 2012, not 2014!

32. Multiple Providers
MD, PhD, DSW, CSW/
MSW
Multiple Practice Settings
Private (in community)
Hospital-based group
Multiple Regions
NY, DC ,NC and GA
Multiple Prescriptions
ONE INSURANCE
COMPANY
STRATEGY: I’ve used one
payer for all Rx for the majority
of time. Capture the data of
many providers for one
source. Surely, the data will
be here.

33. …BUT MANY SUBCONTRACTORS
Is the record with
Behavioral
Health?
Or with Pharmacy
Benefits
Management?
with impermanent business relationships
HIPAA in the 20th Century…

34. The records had an expiration date. Record
retained for 1 year. Is access, view, download…a
temporary standard for business partners to
uphold?
PHARMACY BENEFITS
MANAGEMENT

35. Multiple Providers
MD, PhD, DSW, CSW/
MSW
Multiple Practice Settings
Private (in community)
Hospital-based group
Multiple Regions
NY, DC , NC and GA
Multiple Prescriptions
ONE PHARMACY
MODIFIED STRATEGY: I’ve also
used one pharmacy for all Rx
for the majority of time. Surely,
the data will be here.

36. NATIONAL CHAIN PHARMACY
(NOT HOSPITAL BASED)
Pharmacy records and codes not
compatible with hospital and outpatient
coding. Information provided would not be
understandable.
HIPAA in the 20th century…

37. DESPITE GAP IN MEDICAL
HISTORY

38. PROGRESS
MADE
INVESTMENT
1 Drive (15 miles, paid
parking) in-person request
2 Phone Calls (20-25 min
each)
1 Conference Call with
primary practice office
manager & NIH study
recruiter (25-30 min)
RETURN
Electronic copy of medical
records for first 3 years after
diagnosis (notes & Rx
history from 3 providers)
FAX copies of medical
record for internist whose
care I’ve been under for 1
year)
https://upload.wikimedia.org/wikipedia/commons/b/b9/NIH_Clinical_Center_south_entrance.jpg

39. Blue Button at its start was about a minimal and easy format standard in a text
file. The Medicare Blue Button is a text file, but it is not appealing to see.
~Humetrix CEO Bettina Experton, MD on February 26, 2013
a temporary solution...load PDFs to jump drive

40. HURDLE #4:
ATTITUDES
Photo by Stuart Miles

41. Eager to receive medical records
emphasizing a short turn-around time
Reluctant to share medical records
Long turn-around times
Format is only of moderate value
Broadly define research data (which
is NOT shared with patients)
Some designated research data may
have clinical value now or set a
baseline for patient
Impact Translational & Personalized
medicine
SLOWER CHANGE
FOR RESEARCH

42. REQUESTED ON 11/12
RECEIVED ON 3/13
Paper copies of summaries received February 2013. Made
second (in person) request for imaging at that time.

43. Photocopied paper record
from NIH
Gave it to Internist to add to
my record.
(Will they digitize it and make it
available at their patient portal?)
Fill gap: make request from
providers in non-hospital-
based practice setting.
Continue to populate
iBlueButton account
NEXT STEPS…
By Petr Kratochvil

44. If meaningful use stage 2 is about
exchange, then in some practice
settings, there is still much work
to be done.
Maybe it’s not an 110m sprint but
more like a 400m race. It should not
be --- a steeple chase.

45. KEY IDEAS
Progress towards meaningful
use is greatly varied so
hurdles remain.
ACCESS:
Physical , Timely, Financial
LITERACY:
Patient knowledge of health
care system
Provider knowledge of
patient rights & new laws
ATTITUDES:
Who owns the data? To what
end?
By: Anna Cervova

46. PATIENTS & PROVIDERS DISCUSS DATA
Tweets embedded throughout were
comments from the June 20, 2013 #HCHLITSS
chat. Participants discussed personal and
professional experiences accessing their
health data.

47. JOIN THIS INTERDISCIPLINARY FORUM THURSDAYS 8(EST)

48. Thanks for your
time!
For info about health communications and strategic
engagement services visit:
http://www.enbloommedia.com
Contact Alisa:
alisa@enbloommedia.com
@enbloommedia on twitter