Guest blogger Peter Elias, MD  describes his journey on opening up his office notes to patients. Peter is a family physician in active primary care practice since 1977, co-founder of a group practice now owned by a hospital-based multi specialty group, with a dedication to patient centric care and interests in behavior and learning, information science, systems and the big picture, and with love of his family, nordic skiing, hiking and thinking for himself. The author’s blog is PeterEliasMD (personal observations and perspectives.

Nearly a year ago I embarked on an adventure that has been changing how I practice medicine. It is also changing how medicine feels.

It began quite innocently. During an office visit to discuss a new diagnosis of a serious and chronic illness, we talked about problems inherent in the need to involve several physicians practicing in three different communities, I explained that because there is no unified patient record and clinical systems do not share information. the patient and his wife would have to help manage this. They should request a copy of all his evaluations, tests and treatments, keep these organized in a notebook or other file, and bring their information to visits. As they were leaving, they asked how to get a copy of the note from today’s visit. (My institution does not provide a secure portal for patient access or communication.) I told them that I finished my day’s notes every evening and would send them a copy the next morning. Reviewing his note that evening, I had an epiphany: my notes were written from my perspective and designed to help me. My intent was a real-time transcription of the interaction, but only from my personal perspective. The notes described my agenda, my assessment of the patient’s condition, my understanding of the plan, and my recommendations. They sometimes included comments that were accurate but inappropriately phrased and troublesome: “History challenging because patient disorganized.” “Patient has DM but has not had surveillance lab done for 12 months.” “Seen here by X two weeks ago but no note in chart.” They were detailed, accurate and organized, but could have been written without the patient being involved. In fact, they WERE written without the patient being involved.

It was easy that evening to edit the ‘Plan’ part of his note, listing the items we had agreed upon as our plan going forward, but the discordance between what had been a very collaborative interaction and my physician-centric note was painful. During the next few weeks, the experience haunted me. I found myself wondering as I did my notes, “What would the patient think if he/she read this?” I now think of that as Stage 1: realization. I needed to make the assessment and plan reflect the collaborative process and our shared understanding of the visit.

My approach to writing notes began to change, and MY assessments began to look like OUR assessments. I began to more frequently use the ‘Patient Instructions’ page to list and then print our shared plan. This was Stage 2: limited and marginal change. It was still my note, but I began increasingly often to record the assessment in patient-friendly language and provide a record of my understanding of the plan.

I began printing and providing occasional office visit notes to selected patients, but it was a struggle and made me uncomfortable.

• I didn’t know what I was doing. It was a true experiment. I knew **I** would like a copy of visits from my clinicians, but I had no idea how my patients would react.
• It was hard. I had been writing notes for myself and my colleagues for 30 years, and I really didn’t know **how** to write something that would work in both the professional and patient universes.

Three things happened. I had a week where several patients commented on how helpful the printed office visit had been. (“I showed it to the MGH nephrologist, and she said it really made a difference, putting things in a new context.”) A trusted colleague brought me an old note I had written, justifiably upset about how I had phrased something in a way that reflected poorly on the care he had provided. My nurse asked why I had not given a particular patient a copy of the office visit note, and I answered that if I did it for that patient, I would have to do it for all my patients.

Thus began Stage 3: intentional major change. I decided to write all of every note with the assumption that patients would be reading them. I began with a goal of providing 3 patients a day with a copy of their note at the end of the visit, and gradually increasing as time went on.

I’m not sure when stage 4 began: using the office note consciously as a collaborative tool. It evolved as a natural consequence of Stage 3 and feedback from patients. I am trying to do as much of my note ‘out loud’ as possible and am giving close to three quarters of patients copies of their notes (or printing and sending them the next day).

I have learned a lot and it is getting easier. Here’s are some of the things I have experienced and what I have learned:

• It changes the nature of the office visit note, but in a good way. For example, the EHR contains cruft that accumulates over the years, often no longer (and sometimes never) pertinent or accurate. There may be things that are phrased VERY badly. (“History hard to take because patient disorganized and contradicts himself.” “Pt has no insight into her own role in her symptoms.”) OMG, I wrote that? What was I thinking? I now start about an hour earlier and spend time starting the OV (Office Visit) note on all my scheduled patients. I fix problem, medication and allergy lists. I scan for things that are due or information lost somewhere in the note.
  (Today I saw a patient with a severe cardiomyopathy, a history of ventricular tachycardia who had had a defibrillator placed, none of which was on her problem list.) This makes the note readier for patient consumption and helps me focus on the agenda of the visit rather than the chart. There is a marked difference between these visits and the ‘add-ons’ where this hasn’t happened.
• It slows me down. Which is good. Fewer mental shortcuts mean fewer logical mishaps. More explanations mean better understanding. Answering more questions means dealing with fewer errors. At some point I will hear about this from my institution, as it impacts my productivity in terms of dollar generation. My response is that I am in the business of delivering a quality service, not a quota of wRVUs (work Relative Value Unit* ), and am improving my productivity in terms of quality.
• It is hard. I am adapting and changing some very ingrained behaviors.
• It is lonely. I would love to be able to travel this road with my colleagues, sharing experiences and learning together.
• It is energizing. Though it is hard, it feels really good. I am noticeably happier with how my days feel. It is a bit embarrassing that it took me so long to figure out why the extra effort feels so good: it puts a premium on what should be important: collaborative communication. My focus is on
  the clinical process and forensic documentation and wRVU generation are marginalized.
• Thinking out loud helps. Me and especially the patient. Less and less am I working in my head and then translating. More and more I work out loud in the translated version. Less stuff gets lost in translation. I find myself explaining why I am asking some questions (or asking them again) or doing (or skipping) part of the exam. It is harder to be lazy, skip things, or gloss over issues out loud than in silence.
• It prevents errors. Patients notice errors, but need encouragement to point them out. I have been a bit surprised at how apologetic my patients have sounded when they point out something for which I should be apologizing. (“I think you misunderstood me. I said there was no pain, just that funny feeling.”) And the response is easy: “Thanks. That’s why I do this out loud.”
• I have to explain what I am doing earlier than I thought. If I explain early and slightly apologetically that I am typing furiously because I want to get it down now while it is fresh so they can have a copy of the visit note when they leave, it makes a difference. When we are done with history and exam, and reviewing old data, it seems pretty natural to talk through the assessment and review plan options while typing. I can read it back and ask if it makes sense or if I’ve left anything out. I can ask if it makes sense. I can ask if I they want me to add anything. In effect, the note becomes a collaborative tool I share with the patient, rather than a chore designed to satisfy risk managers, coders and auditors.
• Patients like it, but often for reasons that surprise me. “Thanks. My wife never believes me when I tell her what you said.” “Thanks, maybe THIS will get my mother-in-law off my back.” “Thanks, I can give a copy to day care so they understand his headaches better.”
• It spreads. I was not surprised when a couple partners commented that their patients had asked them to do this. I was surprised when my nurse told me she wanted to print and send a visit note on a patient (I hadn’t finished it in time) because she was pretty sure the patient wasn’t going to remember what we had decided. A few patients have said they are telling their friends how great this is and suggested they ask their doctors to do it. I’ve had several consultants call to ask if the ‘cc’ with the patient’s name at the bottom really means I gave the patient the note, and say they think they may start sending the patient a copy of the letters they send me.
• When I am running behind, if a note is going to be too complex to complete during the visit, or if I have some work to do before I am comfortable having the patient read the note, there is a very simple solution. “I want to make sure you have a copy of what we’ve done and decided today, but this is complicated (or your chart has some old stuff in it that makes it confusing and hard to understand) so I’ll finish the note at the end of my day and we’ll put it in the mail tomorrow. If you don’t get it in a couple days, call to remind us.”

When I started, I was doing 1 a day. After a couple months I had crept up to 4-5. I am now approaching 15 (out of about 20) a day, and I anticipate this being my default by the end of the year.

When I began this journey, my message to clinicians would have been: “Patients are entitled and will be expecting access to your notes, so you might as well write them that way.” While that is true, my message now is quite different: “Try it. You – and your patients – will like it.”

For more information about other doctors sharing office notes with their patients, check Robert Wood Johnson Foundation’s project Open Notes.

* wRVU – work Relative Value Unit – is the way that the clinician component of professional work is measured and tabulated. Each CPT (current procedure terminology) item has number, a description and a RVU. The ‘w’ component is why the clinician does in order to have it separate from things like overhead.   Pretty much all payers use RVUs and a conversion factor ($ per RVU) to determine how to reimburse for given services. The RVU relates them to each other and the conversion factor relates them to the outside financial world.