long stories: the story of meaningful use and why the patient voice matters

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

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  • 1. LONG STORIES:The Story of Meaningful Use and Why the patient voice mattersby 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 recordshad 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 hospitalizedand 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 pageThey were told it would costand there would be a 21 day wait to see the record. 4. Meanwhile,Fred was a huge fan ofStephen King.Regina realized he might notlive to see the Kings newbookUnder 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Domeprinted in the fall.She emailed a book buyer,who emailed the publisher,who emailed Stephen King.Fred received an unpublished book by an A-List author inone week using the power of online communicationcoupled with the kindness of strangers, yet he couldnot access his own medical record within his hospital. 5. After waiting 3 weeks in a hospital for treatmentand access to the written record,Regina and Fred were told on aSATURDAY.That Fred would be sent home on a PCA pump.Fred was being sent home to diewithout ever having access to his ownelectronic medical record.They fought for transferto another facility to get a 2nd opinion.Fred was transferred 5 days later. 6. Fred was sent by ambulance to another hospitalwith anout-of-dateandincomplete paper copy of hismedical administration recordandtransfer summary.He would wait painfully for6 hourswhile the staff of the new hospital would cobbletogether a new medical record using aTelephone and a Fax machine. 7. The following day, Freds 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 aproblem as she was acting as acourier.The the 1st facility printed out the record in1 hour and for the new doctors. 8. After the doctors read Freds record,they gave it to Reginasaying 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 andactionable datathat if accessed, in a timely fashion,would have extended and improvedFreds quality of life.Regina decided to paint aboutpatient data accesson 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 73cents.This is the vital patient story, the social history , the sacred heart of FredsELECTRONIC MEDICAL RECORD. 11. Meaningful Use Stage 1 final ruleWas announced on July 13, 2010.There are 15 core measuresAnd a menu set of additionalmeasures that providers canchoose from.Providers must fulfill the coremeasures and additional menuitems to receive incentive funding.This stage is often called the carrotpart, of the carrot and the stick. 12. Change is scary, but I ask you to brave and embrace these recommendations for stage 2Meaningful USE 13. Patients and Family Caregivers shouldbe able to view, download, and transmittheir own electronic health informationin a timely fashion,ideally in real time,but failing that, within24 hours of the care episode.Providers should fulfill requests foraccess at least 80% of the time ratherThan the 50% of stage 1. 14. The electronic medical record shouldbe an open record.Patients and Family Caregiversshould be able viewlabs,vitals,imaging reports,active care summaries,discharge summaries,doctors progress notes,nurses progress notes,medical administration recordsand medical reconciliation reports.Nothing about us without us. 15. Daily at least7,500 patients complete the HCAHPS survey, lets improve that number.As of 2013,The Total Performance Score for Hospital VBP (Value Based Purchasing) will have two componentsClinical 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 thatFamily Caregiversare recognizedas a legitimate part of the care team.It is important that those who designthe EHR and hospital workflows havestrategies in place to utilize the skillsand expertise of the family caregiverand accord them titles of respect andthat inclusion should be recorded asstructured data.We are more than the next of kinwho picks up the box of belongingsafter a death. 17. Secure messaging mustbe supported in many forms.It is important that patient preferencesfor communication are recordedand that multiple types ofcommunication are available for thevarious types of information. 18. Electronic health systemsmust support the inclusion ofpatient generated data,patient medical reconciliation(what the patient is taking while at home),smoking status, and family health history.The Patient Portal andClinical Decision Supportfor PatientsIn order to create patient measures that haveequal weight compared to clinical measures,patients/caregivers must have access tothe tools of data creation and capture.Only then can we attain an equal footing.Patients must be part of the data creationprocess from triage, through the entireepisode of care culminating in a personalqualitative discharge summary. 19. There are some who wish to exemptBehavioral Health care from arequirement for secure messaging.These patients need accessto their records and care team just as muchas any other patient. 20. Disability status must be collectedin 80% of patients as a core requirement.Many disabilities, such as autism, are notreadily apparent in the care setting but candramatically effect the care experience whilehospitalized 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 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 abetter tomorrow.I ask you to let us row together.~ @ReginaHolliday