Progress towards Meaningful Use: A Patient Perspective

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

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Progress towards Meaningful Use: A Patient Perspective

  1. 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. 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. 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. 4. …with your medical records in hand. You’ve met the preliminary inclusion criteria for this study. When can you get here?
  5. 5. FINISH LINE: Consolidate medical records into electronic form.
  6. 6. CRITERIA FOR MU STAGE 2 WOULD BE IDEAL TRANSMIT   DOWNLOAD   VIEW   ACCESS   But it’s 2012, not 2014!
  7. 7. HURDLE #1: TIMELY ACCESS
  8. 8. 7-10 BUSINESS DAYS TO PROCESS HIPAA IN THE 20TH CENTURY… Comments from recent tweet chat echo similar experiences.
  9. 9. VIEWING, A VIABLE OPTION… UNLESS STRATEGY: Viewing the record & make notes of the important stuff, until I receive my copy.
  10. 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. 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. 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. 13. Medstar Georgetown University Hospital has decentralized request locations: Outpatient clinic in individual department Film library All other request centralized ACADEMIC MEDICAL CENTER
  14. 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. 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. 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. 17. RECORDS RECEIVED: 8/2/12 Received record in 3 days!
  18. 18. INDUSTRY FAVORITE IN eDelivery
  19. 19. eDELIVERY: ACESS, VIEW, DOWNLOAD…
  20. 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. 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. 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. 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. 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. 25. By Benjamin Miller HURDLE #2: FINANCIAL ACCESS
  26. 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. 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. 28. PATIENTS & CAREGIVERS ALSO COORDINATING CARE Should there be any exceptions?
  29. 29. HURDLE #3: KNOWLEDGE OF THE SYSTEM & POLICIES This applies to those who work within the system too.
  30. 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. 31. CRITERIA FOR MU STAGE 2 WOULD BE IDEAL TRANSMIT   DOWNLOAD   VIEW   ACCESS   But it’s 2012, not 2014!
  32. 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. 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. 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. 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. 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. 37. DESPITE GAP IN MEDICAL HISTORY
  38. 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. 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. 40. HURDLE #4: ATTITUDES Photo by Stuart Miles
  41. 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. 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. 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. 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. 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. 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. 47. JOIN THIS INTERDISCIPLINARY FORUM THURSDAYS 8(EST)
  48. 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

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