Lifelong Medical Care, Berkeley Primary Care, Berkeley, California
These were the words of a young man who stayed for a few minutes after his primary care visit at Downtown Berkeley Primary Care, to talk to me about his care experience. In fact, this was a new experience for me, too, because it was the first time that a physician whom I was shadowing asked me to do more than observe the visit. Pete Lovett, MD, is the Associate Medical Director of the Berkeley Primary Care Clinic and my guide during the visit.
A little background, first, and a good illustration of why there is more to an organization than their Web site. I am going to break this description into 2 posts for readability.
I was connected to Lifelong Medical via the California Healthcare Foundation, which has a strong interest in supporting the safety net medical providers in the communities it serves. On lifelongmedical.org, it says, “LifeLong is known as the primary “safety net” provider of medical services to the uninsured and those with complex health needs in Berkeley, North Oakland, Albany and Emeryville. In 2004, LifeLong provided approximately 101,000 primary care visits to over 17,000 people, nearly half of whom were uninsured.” I knew prior to visiting that LifeLong does most of its charting on paper, and does not have an online personal health record for its patients. My presumption then, was that I would be here as a comparison for other safety net medical centers I am working with on the East Coast, many of whom I am working with because they have full EHRs or who are in the process of getting them.
Pete is a family physician trained in the National Health Service in the United Kingdom, with experience as Family Practice Faculty at University of California, San Francisco. As a physician in the NHS, he has experience with paperless practices, and in fact told me that his work in the United States has meant a return to less developed ways of moving information around. It turns out that LifeLong Medical does have experience with an EHR that it uses exclusively for its HIV patients.
A conversation with patients
The patient-physician interaction provided an opportunity for Pete to let me know that one of the biggest challenges in connectivity is actually physician-physician, especially in a case like this.
Pete allowed me to shadow him providing care for three of his patients (each patient providing explicit consent prior to the observation), and at the conclusion of each visit asked each if they wouldn’t mind talking to me about their care experience. I have actually not done this before, stepping out of the “shadows” as it were, to step out of the relationship and find out more. I introduced myself and what my interests are and asked about how patients accessed information. One person was fully wired, one preferred to get most information from books but did consult the Internet for drug-related questions. The third individual indicated that they would do this primarily through their cell phone. An interesting cross-section. All were willing to speak to me for a few minutes – a great gift.
The quote at the top of this post comes from a patient who I specifically asked about posting his thoughts on this blog, in a privacy protected way. He is a young man, and is working with both his primary care physician and two specialists to sort out a constellation of symptoms. Like other patients here, he does not have insurance. At the same time, I was impressed at how savvy he had become about his condition. He could relate his test results using medical terminology and his thoughts on the differential diagnoses. He indicated that he was actually involved in selecting the current working diagnosis with one of his specialists, which was also impressive to me.
I asked the patient what it might be like for his physician to use a computer in the exam room, and in the background of an unclear diagnosis. “What if your physician wasn’t sure what you had – how would you feel if they sat here and searched for medical information in front of you? How would that affect your confidence in him/her?” The answer was that it would actually increase it, and would provide more opportunity to communicate.
“What if you could e-mail your physicians in between visits to ask questions about your health?” He thought about this a bit and endorsed it. We talked about the fact that his last conversation about treatment options happened on the phone with one of his specialists, and he didn’t want to take up their time, so needed to make decisions on the spot. And this is where the quote at the top came from, “I want my doctors to meet me half-way.” So, the ability to be given information, do some exploration, and then come together would be useful. It would especially be useful if all of the doctors came together to discuss the case with him, he told me. He said he was uncomfortable with his role in choosing the working diagnosis – wouldn’t this be something his doctors could advise him on more definitively?
I then asked him about some of the questions he asked of his doctor, and whether some answers were more important than others. I told him that from my view, it seemed like the more important questions came toward the end of the visit. He didn’t endorse this assessment. Instead, he said, “I am here to precipitate information,” – his exact words. It was kind of a gradual request/release of information over time, in a relationship-supportive way. This was the most important thing, not any specific question. He then said, “You know, it’s possible I wouldn’t even need to come here if I could get this information.”
My last question (before asking for consent to tell this story) was about whether what I was interested in – patient centered health information technology – was the thing he would identify as important for health care. I didn’t want to presume that what I do is most important – was there something else? He thought for a bit and said that it would be helpful for him to have an ongoing connection with his doctors over the Internet. I didn’t get a sense that he felt he knew what the most important avenue was to improve his care, but I did get the sense that he knew what needed to be improved – the theme of being able to reduce uncertainty which seemed at odds with the physician culture of leaving uncertainty as a possibility.
Uninsured does not equal uninformed
The conversation had a significant impact – as I said previously about looking beyond an organization’s Web site, I learned that “uninsured” does not mean “uninformed.” I was especially moved by the fact that the unknown nature of the symptoms being explored could have a significant impact on this gentleman’s choice of career – there were that many unknowns.
Information you can only get through observation
And speaking of unknowns, something else happened in the visit that also impressed me. At one point, the patient pulled a piece of paper from his bag and showed it to his doctor. He said, “Here are the lab tests that my specialist has ordered.” I was allowed to see the piece of paper, and it was a list of laboratory exams, with prices next to them, and a single word with the result of each. No more information than that. Because the exams were not ordered through his primary care, there would likely no reimbursement. In addition, it would be hard to counsel on the results since the physician who ordered the exams was not present. There was a total cost at the bottom, near the amount that a person might spend on rent in a month.
I am not used to seeing moments like this in an integrated system. I felt very disappointed in our nation’s health system at that moment. At the same time, these scenes are going to repeat themselves even in integrated systems, as patients sign up for catastrophic health plans and higher and higher cost shares. How can we let this happen as a profession?
I’ll post part 2 tomorrow, which will touch more on information seeking behavior, my shadowing with Frances Herb, MD, and my reflection of myself as a physician who has not been near safety-net systems in my career to date.
In the meantime, I want to thank Pete, his staff, and his patients for taking the time to show me how much they do for their patients and their community.