Hi all, Just a brief note today. I’m giving a talk to the Statistical Advisory Group at the CDC tomorrow (via Zoom). The talk is entitled, “Measuring Excess Mortality During A Pandemic: Increasing Granularity, Speed, and Accuracy.” Preparing the talk has been all consuming because I’m creating a mostly new slide deck for the occasion (with help from my colleague Benjy Renton, based on work from my research collaboration with my wonderful colleagues down at Yale). We’ll provide them with some updates on metrics they might already know about, but we will also unveil some things that they definitely have not yet seen. I’m really looking forward to it! And it’s just a nice opportunity to reflect on how far we’ve come, both in terms of the pandemic and in improving research methodologies.
"how far we've come": with the CDC holding a 2000 person gathering with no mitigations, a conference specifically to celebrate how far we've come and then having to cancel some meetings due to Covid spread amongst the attendees--it's hard to celebrate how far the CDC has come re: Covid. Especially as they will stop collecting and sharing data.
RE: open records, as an MD, I am thrilled to have my portals. But, I also am very careful not to overwhelm my providers with messages via portal--rarely send them. I do look at my notes and they are just so inaccurate, but I understand the limitations.
Good morning, I read Dr. Ofri’s New Yorker article, and while I understand the added burden that the recent changes in patient access has brought to the difficulty PCPs encounter managing the demands of their patient load and adjusting to that demand, I find access to my medical data important to my wellbeing. I want to know everything that I can learn about my ailments. Patients know that their PCP have about a half an hour allotted to them during any appointment. We watch the doctors glancing at either their watch or the computer screen clock and trying to move the appointment quickly to a conclusion. Patients should try to come to an appointment with a written list of their concerns, so if they have the results of their testing, they can ask relavant and semi-informed questions. When confronted with a new ailment, patients walk into a dark closet with no light. If other patients are like I have been during these periods, they find themselves totally alone and fearful. They need information and reduced censorship. Medicine is a capitalistic system so unfortunately, too often, we feel like it is buyer beware. So, our alternative is to ask questions. When our doctors appear annoyed by a questions and rushed, paranoia becomes difficult to control. I welcome information. Thé more; the better.
Something that I always encourage friends and family to do, which comes from my partner, is to bring a pen and paper with them to every appointment in addition to questions. As the appointment concludes, quickly recap what you understand was discussed. This approach is an excellent supplement to the clinical notes on my portal and allows me to build a comprehensive history that I can share with providers.
Finally got around to reading this today, it's a very well-written article and I thought the final anecdote was very moving. I do agree that we should have transparency with stipulations, whereby a provider is able to talk to the patient (or a reasonable amount of time passes) before notes are published for the patient to see, i.e., the records still exist and are not able to be suppressed, but it gives the provider time to gather thoughts.
My partner, who is a RN, saw some of the negative side effects of transparency whereby a patient whose primary team was not oncology saw results (and clinical notes) about a cancer diagnosis but hadn't yet received a visit from oncology (my partner has observed this happen with multiple patients). That being said, the other side of it was when I was diagnosed with a possible infection after complications from an appendectomy, my parents were able to see my results before rounds and were able to have time to formulate thoughtful questions, rather than spend a lot of time just getting up to date (and especially during morning rounds that was challenging as there's so much that has to be done in limited time).
I guess this is a non-answer to the question of whether we should have this much transparency. I guess one of the questions that I would ask with this, is who should own the patient's medical record as that is part of this issue. Technically the hospital does, so they should get the choice. However, is that right? I'm not so sure.
So I'm left with more questions, but all important ones to think about and for us to think about as a society.
"how far we've come": with the CDC holding a 2000 person gathering with no mitigations, a conference specifically to celebrate how far we've come and then having to cancel some meetings due to Covid spread amongst the attendees--it's hard to celebrate how far the CDC has come re: Covid. Especially as they will stop collecting and sharing data.
RE: open records, as an MD, I am thrilled to have my portals. But, I also am very careful not to overwhelm my providers with messages via portal--rarely send them. I do look at my notes and they are just so inaccurate, but I understand the limitations.
Good morning, I read Dr. Ofri’s New Yorker article, and while I understand the added burden that the recent changes in patient access has brought to the difficulty PCPs encounter managing the demands of their patient load and adjusting to that demand, I find access to my medical data important to my wellbeing. I want to know everything that I can learn about my ailments. Patients know that their PCP have about a half an hour allotted to them during any appointment. We watch the doctors glancing at either their watch or the computer screen clock and trying to move the appointment quickly to a conclusion. Patients should try to come to an appointment with a written list of their concerns, so if they have the results of their testing, they can ask relavant and semi-informed questions. When confronted with a new ailment, patients walk into a dark closet with no light. If other patients are like I have been during these periods, they find themselves totally alone and fearful. They need information and reduced censorship. Medicine is a capitalistic system so unfortunately, too often, we feel like it is buyer beware. So, our alternative is to ask questions. When our doctors appear annoyed by a questions and rushed, paranoia becomes difficult to control. I welcome information. Thé more; the better.
Something that I always encourage friends and family to do, which comes from my partner, is to bring a pen and paper with them to every appointment in addition to questions. As the appointment concludes, quickly recap what you understand was discussed. This approach is an excellent supplement to the clinical notes on my portal and allows me to build a comprehensive history that I can share with providers.
Finally got around to reading this today, it's a very well-written article and I thought the final anecdote was very moving. I do agree that we should have transparency with stipulations, whereby a provider is able to talk to the patient (or a reasonable amount of time passes) before notes are published for the patient to see, i.e., the records still exist and are not able to be suppressed, but it gives the provider time to gather thoughts.
My partner, who is a RN, saw some of the negative side effects of transparency whereby a patient whose primary team was not oncology saw results (and clinical notes) about a cancer diagnosis but hadn't yet received a visit from oncology (my partner has observed this happen with multiple patients). That being said, the other side of it was when I was diagnosed with a possible infection after complications from an appendectomy, my parents were able to see my results before rounds and were able to have time to formulate thoughtful questions, rather than spend a lot of time just getting up to date (and especially during morning rounds that was challenging as there's so much that has to be done in limited time).
I guess this is a non-answer to the question of whether we should have this much transparency. I guess one of the questions that I would ask with this, is who should own the patient's medical record as that is part of this issue. Technically the hospital does, so they should get the choice. However, is that right? I'm not so sure.
So I'm left with more questions, but all important ones to think about and for us to think about as a society.
Thoughtful New Yorker article link. Thank you.
Great linked article, thanks. Looking forward to hearing your new results.
I'm finding notes hard to navigate and would appreciate if you keep the content in an email format