1. Have A Seat at the Table: Thoughts on Patient Access By Regina Holliday

2. Information Access is Personal…. In September of 2008, Fred Holliday II had a PhD. in Film Studies and had just been hired as a professor in the Literature Dept. of American University. He immediately went for a physical exam as he now had a position with insurance. He was diagnosed with hypertension. I worked as assistant manager in a toy store and taught part-time art. We had two wonderful boys and our eldest had just been diagnosed with an autism spectrum disorder.

3. By 2009, Fred was in constant pain during the months of January, February and March He visited two Emergency Depts. and visited the Doctor’s office many times. He was given pain pills and laxatives.

4. Fred was hospitalized on March 25th 2009 for the administration of tests. On March 27th, he was told while alone that he 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.

5. We celebrated Fred’s 39th Birthday in his room at the hospital On March 31st . That was the day after the oncologist on call told us the results of the Bone Scan and Pet Scan. The metastasis had spread “everywhere.”

6. 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?

8. 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.

9. “She must have not tried very hard to get the record…..”

10. One reason given for denying patients timely access to their medical record: “Patients aren’t educated enough to understand their electronic medical record.”

11. I eventually got a copy of Fred’s record, and despite its many errors, it was instrumental in guiding Fred’s care. I used that information to create an easy to understand “face-sheet.”

13. 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.

14. Facebook: a PHR with Privacy Issues? In the seven months prior to diagnosis, 10.7% of Fred Holliday’s Status Posts Related 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.

15. Facebook as a Caring Bridge I joined Facebook on September 14, 2008 in order to organize the volunteers staffing 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.

16. On June 17, 2009 at 10:43 am Fred died. The nurse came by after 11:00 to help prepare the final transport. After the funeral transport left, I logged on and posted the final status line in Fred’s medical journey.

17. Patient Access made public… On June 2nd I wrote a letter to my friends in Health 2.0 detailing the rights I thought every patient should have. On June 21, I spammed everyone I knew. I wrote that I would paint a giant mural detailing our struggle within the healthcare system and use it to promote patients’ rights. On June 22nd, A Declaration of Health Data Rights was issued

18. Hi, my husband received his diagnosis of renal cell carcinoma on March 27. At that point, I began to email, do Internet research, try to find every resource I could to help him. I began to Facebook--Facebooked every night daily, stating his status, developed over 200 friends and then began to Twitter, ended up speaking to a doctor from Boston, Mass. Did everything I could as a caregiver to support my husband using the Internet. Developed a blog. Also asked for Internet data. Prior to this I did not (often) email, nor did I use a cell phone. During a three month period (I) became complete caregiver and a walking PHR for my husband. I am asking you how will the patient and patient advocate be allowed to access the information of (the) EMR, to have that a standardized form, that we all as advocates of our spouses or loved ones, (can) provide the best the best level of data and catch all kinds of errors in the medical record?” -Regina’s Question to Aneesh Chopra 6-29-09

19. Medical Advocacy Mural Project

22. Speaking to Anyone willing to listen

23. Creating Change in Medicine through Art…. Death of the Paper Transfer

24. Why Do You Think Facebook Is So Successful? Our Brains Are Wired To Look At Faces….

25. When you listen to patients You give us back our names.

26. Do you need to be famous or have a degree in medicine to advocate for data access?

27. These are regular people that are out there everyday advocating for us all.

29. Patients See with fresh Eyes. Patients Hear with new Ears. Patients Ask questions In a new way.

30. Embracing your inner pariah Business Jackets depicting Health Paintings? If patients can’t get a seat at the table, at least they can get their “face” in the room

31. Sometimes when we embrace our inner pariah, we get a hug in return.

32. What happens when an artist combines HCAHPS Scores and Data Visualization? “She took to the streets and painted great art with the Community Health Data” -Sunlight Labs Blog

33. The Future of Patient Participation and Meaningful Use

34. “The Menu Set” Meaningful Use in a Diner. Have a seat at the table.

35. That is my question for all of you what do we do next?... Thank you so much for coming tonight. Thank you so much for being part of Fred’s life and my life and spreading the word. And please go out tonight and Facebook and Blog and post and tweet, and do not stop. Do not give up until we get change in this nation, until people get taken care of and we all have the right to see our own information. October 20th 2009