The Power of Knowing www.opennotes.org

What is OpenNotes? “OpenNotes” is an initiative to give patients access to their medical providers’ notes via secure patient portals. Not a specific vendor product or software. Typically (but not always) each patient notified automatically via e-mail message when a note has been posted and signed and invited to review it…and reminded to review it again before their next scheduled visit. Started with a research and demonstration project in 2010, involving more than 100 PCPs and 20,000 patients in Boston (BIDMC), rural Pennsylvania (Geisinger), and the Seattle inner city (Harborview). Now implemented in 50+ organizations reaching more than 8.5 million patients. www.opennotes.org

www.opennotes.org

V2: and here’s where things get even more interesting - pt eng not only helps patients, it can also help clinicians and hc centers. Take this picture… drawn by a 7yo…there’s a lot we can learn from pts but we don’t ask and they don’t tell. And that is a tremendous missed opp. imagine the feedback to the doctor. This piece is called the cost of tech,… and it is the cost the way we use it today. When I talk to doctors… lament… imposter. But it doesn’t have to be that way. What if the computer could bring pts and clinicians closer to gether … to help patients AND clinicians… and that is what we are here to talk about today In some ways technology, the way we use it today, exacerbates the problem. This is a picture drawn by a 7yo published in jama about her visit to the doctor. Here she is…chilling, right? There’s a lot we can learn from pts(even 7 yr old pts) about how they view our care… “we don’t ask, and they don’t tell…” When I talk to clinicians they lament the EHR – the imposter… V2: patients can learn a lot from their records, and the health benefits are important… but there is also a lot we can learn from patients. Here’s an example. www.opennotes.org Toll, JAMA 2012

The OpenNotes Study’s Three Principal Questions Would OpenNotes help patients become more engaged in their care? Would OpenNotes negatively affect doctors’workflow? After one year, would patients and doctors choose to continue? www.opennotes.org

Participants 108 volunteer PCPs and more than 19,000 of their patients who use portals BIDMC (urban and suburban Boston) 39 PCPs 10,300 patients Geisinger Health System (rural Pennsylvania) 24 PCPs 8,700 patients Harborview Medical Center (inner city Seattle) 45 PCPs 270 patients (new portal) Beth Israel Deaconess Medical Center Teaching hospital of Harvard Medical School in Boston Geisinger Health System Integrated health center serving 2.6 million people in rural Pennsylvania Harborview Medical Center Safety-net hospital in inner city hospital www.opennotes.org

PCPs’ Concerns and Experiences (surveys after 12 months experience with open notes) www.opennotes.org

PCPs’ Main Concerns changes in workflow Pre-intervention (%) BIDMC/GHS/HMC Post-intervention (%) Visits significantly longer 23/32/21 3/5/0 More time addressing patient questions outside of visits 49/45/34 8/0/0 More time writing/editing/ dictating notes 46/36/34 21/14/0 And, compared to the year preceding the intervention, the volume of e-mails from patients did not change www.opennotes.org (Delbanco et al, Ann Int Med, 2012)

Patients’ Experiences www.opennotes.org

Among Patients with Notes (Visits): 82% opened at least one of their notes Few patients said reading notes made them Worried (5-8%) Confused (2-8%) Offended (1-2%) 20-42% shared notes with others www.opennotes.org

Among Patients with Notes: 70-72% of patients across the three sites reported taking better care of themselves 77-85% reported better understanding of their health and medical conditions 76-83% reported better remembering the plan for their care www.opennotes.org

Among Patients with Notes: 69-80% felt better prepared for visits 77-87% felt more in control of their care 60-78% of those taking medications reported “doing better with taking my medications as prescribed” First question: did they look? From portal use data Sharing usually family members or relatives HMc recruited, not committed portal users Reasons for not reading: forgot couldn’t find no reason www.opennotes.org

Comments and the Bottom Line www.opennotes.org

Comments from Patients Weeks after my visit, I thought, "Wasn't I supposed to look into something?" I went online immediately. Good thing! It was a precancerous skin lesion my doctor wanted removed (I did). In his notes, the doctor called me "mildly obese." This prompted immediate enrollment in Weight Watchers and daily exercise. I’m determined to reverse that comment by my next check-up. If this had been available years ago I would have had my breast cancer diagnosed earlier. A previous doctor wrote in my chart and marked the exact area but never informed me. This potentially could save lives. It really is much easier to show my family who are also my caregivers the information in the notes than to try and explain myself. I find the notes more accurate than my recollections, and they allow my family to understand what is actually going on with my health, not just what my memory decides to store. new www.opennotes.org

Comments from Doctors I had to have better documentation, which is a good thing. My fears: Longer notes, more questions, and messages from patients. In reality, it was not a big deal. For me the most difficult thing was having to be careful about tone and phrasing of the notes knowing the patient would be reading them. I felt like my care was safer, as I knew that patients would be able to update me if I didn't get it right. I also felt great about partnering with my patients, and the increased openness. www.opennotes.org

The Bottom Line for PCPs After a year, PCPs were asked: Taking all considerations into account, I would like my patients to continue to be able to see my visit notes online. Some said no: 26% of BIDMC PCPs 17% of GHS PCPs 19% of HMC PCPs But, when offered the option of turning off open notes at the end of the year-long intervention, not one doctor asked to do so. www.opennotes.org 16

The Bottom Line for Patients After one year, 99% of patients wanted to continue to be able to see their visit notes online. When given a choice of doctors or health plans in the future: 4 out of 5 patients said the availability of open notes would impact their choice of provider www.opennotes.org 17

The Bottom Line for the Three Institutions All 3 sites decided to expand OpenNotes Geisinger and Harborview: MDs/ NPs/PAs in ambulatory practices BIDMC: All clinicians’notes (ambulatory opened in 2013 and now piloting mental health notes) www.opennotes.org

The Inexorable Rise of Online Access and Transparency Health care becoming more transparent: Open disclosure, lab results, pricing, patient portals… Consumers: “I don’t know if I want to read my entire medical record, but I want to have it.” (focus group participant) Government’s direct-to-consumer promotion of HIT Give Me My DaM Data (Data about Me) HHS has proposed all labs released directly to pts VA Blue Button – downloads entire record MD Anderson – 30,000 pts/yr ONC – starting DTC promotion with video about online access to care and records (does not mention notes though) Give Me My DaM Data (spin off from e-Pt Dave TED talk) DaM = Data that’s Mine Danny Sands sings! www.opennotes.org

Transparency Makes Headlines The Road Toward Fully Transparent Medical Records Letting Patients Read Doctors’ Notes Consumers Gaining Ground in Healthcare Ten Ways Patients Get Treated Better Inviting Patients to Read Their Doctors' Notes: A Quasi-Experimental Study and a Look Ahead Will Reading Your Doctor’s Notes Lead to Better Health? www.opennotes.org Should Patients See Their Doctors’ Notes?

OpenNotes: Standard of Care Guest and Quincy. Consumers Gaining Ground in Health Care, JAMA, 2013 Walker, Darer, Elmore, and Delbanco. The Road toward Fully Transparent Medical Records, N Engl J Med, 2013 www.opennotes.org

Pointing Toward the Future In the study: 49-56% of patients wanted patient proxies to have access (many sites allow this) 86-88% of patients wanted access to inpatient notes (we think 5-10 organizations are doing inpatient) 59-62% of patients wanted to add comments to their notes (currently piloting OurNotes) 30-40% of patients wanted to be able to approve what is written in a note (patient safety research underway at BIDMC) First question: did they look? From portal use data Sharing usually family members or relatives HMc recruited, not committed portal users Reasons for not reading: forgot couldn’t find no reason www.opennotes.org

OpenNotes is like a New Medicine Its goal is to help people manage health and illness more effectively It can have side effects and may hurt some patients Clinicians and patients will need to learn how to use it well www.opennotes.org

Join the OpenNotes Movement! Visit the OpenNotes website www.opennotes.org and sign up for the mailing list Resources for organizations implementing open notes Toolkit for implementers Roadmap and advice about key decisions Sample FAQs for patients and clinicians Sample communications materials Resources for evaluators All open notes surveys are available free of charge Links to all open notes papers are on the website Engaging PFACs, consumer advocates Contact info: Deb Wachenheim, dwachenh@bidmc.harvard.edu John Santa, Santa1177@comcast.net www.opennotes.org