This document provides a first-person perspective on engaging with electronic health records from a patient and caregiver point of view. It describes the author's experience caring for her husband Fred during his illness and attempts to access his medical records and test results. It highlights the challenges faced navigating the healthcare system and obtaining information, as well as the role social media and advocacy played in getting answers and coordinating care for Fred during his final months.

1. Ephphatha:the Eye In HITA Patient and Caregiver Perspective: Consumer Engagement with Electronic Health RecordsBy @ReginaHolliday

2. In 1978, there was a little boy named Freddie who lived in Maryland.And many miles away in Oklahoma, lived a little girl named Regina.And though miles would separate them,Media would connect their hearts.

3. Patient Reported Data is very important.

4. Even a child can understandand appreciate health Information.Both Quantitativeand Qualitative.

5. 14 years later, I would meet Fred on stage in a scenic painting class atOklahoma State University.Wewould talk of Stephen King’s Dark Tower. Andwewould fall in love.

6. Regina worked in a toy store, taught pre-school art, and painted community murals. Fred continued his schooling and worked as video store clerk.In 2005, Fred would get a PhD in film studiesand would write his dissertation onBuffy, the Vampire Slayer.In 1998, Freddie III joined the family gamefollowed by the littlest player Isaac in 2006.

7. For many years, that was theHolliday Family story…

8. Everything we ever wanted… Resolutions January 2008:1. Get Medical Insurance for the whole family 2. Get little Freddie into a special needs school 3. Fred gets a job in his field 4. Spend more time together as a family 5. Get a two bedroom apartmentFreddie’sIEP Binder

9. Fred was happy with his new job.But he was very tired,He went to the doctor and was diagnosed with hypertension.

10. During the months ofJanuary, February and March of 2009, Fred was in constant pain.He visited two Emergency Departmentsand was sent home.He visited his Doctor’s officemany times.He was given pain pills each time.Often he posted a Facebook status relating to his health

11. On Friday March 13th, We went to the ER because Fred was in so much pain .The waiting room was filled with stained glass windows and lovely blue couches.And Daddy waited, Mommy waited, Freddie waited and Isaac waited.And after 3 hours of waiting,they sent us home with pain medication.

12. The Last Primary Doctor’s Appointment: A Very Short PlayRegina: “I didn’t see you weigh him.”PA: “We don’t always weigh our patients”Doctor: “Mr. Holliday do you think maybe you are depressed?”Fred: (Looks up at Doctor with a look of dismay.)Regina: “Of course he is depressed. He is in excruciating pain. We want an MRI.…I am worried about his kidneys.”

13. Fred was hospitalized on March 25th 2009 for the administration of tests.On March 27th, he was told while alone thathe had “tumors and growths.”He was scared and confused and did not understand.His oncologist left town for the next four days to a medical conference and was not reachable by cell phone.

14. I asked everyone involved in Fred’s care about information on his case. What was the diagnosis? What were the treatment options? Would he get a pain consult?For asking questions, Fred’s oncologist called me “Little Miss A-type personality.”

15. Need the book: Under the Dome Regina emails book buyer 4-3-09Buyer emails book rep. 4-3-09Rep emails publisher 4-3-09Publisher gets approval from Stephen King 4-3-09Publisher mails it. Arrives 4-7-09Fred reads book 4-7-09 through 5-1-09Under the Dome is published Nov. 2009 “She must not have tried very hard to get the record….”Comparing access to an unpublished book by Stephen King to accessing the Electronic Medical Record while hospitalized.

16. Need Access to Fred’s EMRAsk to read test results/lab/patient record 3-27-09 through 4-7-09Nurse Internist Social Worker OncologistNothing 3 minutes Fills out Fills out at computer disability forms disability formsAsk to read test results/lab/patient record 4-8-09Visit Oncologist during office hoursSpeak about case, write down notes in journal never shown the computer screenVisit Medical Records Dept. 4-17-09 ask for a copy of EMR Quoted a price of 73 cents per page & a 21 day waitFinally get a copy 4-23-09 due to a paper work error…This is my husband’s medical record.I was told it would cost 73 Cents per page And we would have to wait 21 days to get a copy

17. Fred was a “good” patient. He didn’t make waves. He didn’t complain.After waiting three weeks for a surgery, chemotherapy, a palliative consult and walker,The Doctor told us on Saturday April 18th, “We’ve decided to send you home on a PCA pump.”

18. When I eventually got a copy of Fred’s record and it was instrumental in guiding Fred’s care. I used this information to create an easy to understand “face-sheet.”This was the “Medical Facts Mural.” Then I painted it on a wall in Pumpernickel’s Deli in Washington, DC for all of our neighbors to see…

19. Next, my new friends in the world of Health 2.0 began blogging.

21. Why did we get more help and answers from Social Media than from our local hospital ?I got on Twitter on May 3rd to find Christine Kraft and e-Patient Dave to talk to them about kidney cancer.Within one day were in email contact and then spoke on the phone.By ten o’clock May 4th 2009, I was talking on the phone with Dave’s Oncologist about my husband’s cancer.

22. Facebook: a PHR with Privacy Issues?In the seven months prior to diagnosis, 10.7% of Fred Holliday’s Status PostsRelated aspects of his current medical condition…He visited his Doctor weekly for a two month period prior to hospitalization. He went to two different ER’s in the two months before diagnosis.He exhibited all of the most common symptoms of Renal Cell Carcinoma...And he listed 5 of them on Facebook.

23. Facebook as a Caring BridgeI joined Facebook on September 14, 2008 in order to organize the our son’s birthday party.On March 25th 2009 I had 46 friends and had posted 67 status lines.In the months during Fred’s hospitalization, I would use Facebook as an information clearing-house.Hundreds of friends and family would log on in order to check Fred’s medical status.

24. We fulfilled our final 2008 resolution on June 11th 2009.We moved into a two bedroom apartment so I could care for Fred in home hospice.He died six days later on June 17th, 2009

25. Painting Advocacy meets Social MediaStreet art is truly the first global art movement fuelled by the Internet. –Marc and Sara Schiller, Wooster Collective, 2010

26. “Shouldn’t Art stick to what it does best- the delivery of pleasure? And forget about being a Paintbrush warrior. Or, is it when the bombs are dropping we find out what art is really for?”-Power of Art by Simon SchamaI painted 73 Cents from June 23rd to September 30th 2009. It is still there today, at 5001 Connecticut Ave. in Washington, DC. It is a monument to Fred and patients everywhere.And just like the internet, it advocates 24 hours a day and you cannot tell a wall to shut up.

27. On Tuesday, October 20th 2009We dedicated the Mural while singing songs from Buffy the Vampire SlayerMusical “Once More With Feeling.” When ended the night singing our question,“Where do we go from here?”

28. Patients can write Onion Letters OrOrchid Letters.We can do many things to speak up, join the conversationand reclaim our names.

29. We can remember the Visions of our Childhood These are the features in our neighborhood. The Bakery Circa 1980When was the last time you used aRotary Dial Phone?Or was cashiered at a hand crank cash register?

30. The Doctor’s Office circa 1980How much has the picture changed at your local Doctor’s office?

31. Patients can complete the story of careNurses Progress Notes:04.18.09 09:00Look Dick.See Sally and Tim.Funny, funny Sally.Funny, funny Tim.

32. The patient record makes a lot moresense if you includethe full picture.

33. These paints are same colorThey are defined by their tone. They provide a scale of Value.

34. This is another scale of value. “During this hospital stay, how often was your pain well controlled?”

35. There are a lot of people A patient meets Along the Path of the Beam.Is the Dark Tower leading us ever forward?Is it a Beacon?

36. The Power of Beacon Communities

37. When we light the beacon, we can connect silo’s of thought and realize the potential of a fully functional Health Information Exchange.

38. A consumer’s pledge to participate in Adoption of Electronic Health RecordsIs more than a Public relations strategy. It is a Scared Oath

39. When venders talk with Patients,We realize we share the same vision.

40. When venders speak with patients,A simple logoBecomes a webOf community engagementOr a game that children play.

41. When Venders invite patients to play the game,Everybody WINS.

42. When Patients join in the conversationA scorecard or a surveycan become a child’s report card.And that provides visual and emotional impact.

43. And when an e-prescribing company invites a patient advocate to speak at anInternational Ophthalmology Conferencetheir shared vision creates a new picture of understanding.

44. What sunk the Titanic?It wasn’t an Iceberg, It was a failureTo correctly use Wireless Communication.

45. The Patient Story is sometimes dark and sometimes light.But both are needed for a masterpiece.And the Picture is not complete unless we are all part of the picture

46. Thank you for the conversation. Let’s stay in touch. You can find me as…@ReginaHolliday on TwitterRegina Holliday Washington DC on FacebookRegina Holliday on SlideShareReginaHolliday on Flickr