Patient certainly don’t consider Portals the end-all be-all to patient engagement. Neither should physicians and C-suits
Over the last few months I have had the opportunity to travel throughout the country attending events focused on engaging patients in their health and healthcare care using health information technologies. One key observation I have made is using a patient portal does not achieve true patient engagement for patients and providers.
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Of course Danny Gregory knows how to teach. He’s my teacher at Sketchbook Skool. But kids are a whole new arena. Here’s his thoughtful blog on what HE learned from his kids.
I don’t have loads of fond memories of teachers in high school. And most of the art teachers were especially forgettable. And as you know, the monkey voice in my head makes sure I still retain some ambivalence and self-doubt surrounding my own position as an artist and as a teacher. Nonetheless, I’ve agreed to spend a week with high school students at the International School of Kuala Lumpur and went with a few sketchy ideas and an open mind.
ISKL is a terrific school. It has students from fifty countries, all studying in English, and they go on to top universities in the US and Europe. Great art schools too, RISD, Cal Arts etc. They have lavish resources, a dark room, a theatre, art classes three times a week, a swimming pool, sports fields, a great library — so much more than Jack had in the NYC public schools…
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Mrs. Jones presented to my office approximately six months ago having been told that she had type 2 diabetes two years ago. Her HbA1c was 8.2. This is a measurement of how well glucose has been controlled for the previous three months. Normal is under 5.7 and anything over 7 is typically considered too high. Her number correlated with an average blood glucose of 186 and we know it needs to be under 120 to avoid serious diabetic complications. Since her previous primary care doctor had not been able to adequately help her, I sent her to an endocrinologist. She returned to my office six months later and was proud to point out her HbA1C which was down to 6.2. She said to me, “I read my records from my previous doctor. She told me to diet and exercise. That’s all she ever said. She never told me why it applied to my diabetes. Now I understand how increased weight and lack of exercise affects insulin. Why didn’t she tell me those things?” I thought about it. Why didn’t I tell her? I assumed that the physiology and treatment of her condition had been well explained to her and that she was just ignoring her doctor’s advice. Diet and exercise alone as words are not powerful enough for people to understand their importance. Education is more than advice. It includes understanding the significance of the recommendations.
How many times am I guilty of the same poor communication technique? Doctor comes from the latin docere, to teach. It is part of my job and I hope my patients feel comfortable enough to say, “Hey, I don’t understand that” when I am unclear. Only by working together can we hope to improve the “outcomes of chronic disease”. And more importantly, my patients will feel better and live longer.
Returning from Louisville after the flurry of San Francisco and the MedX conference, I’ve begun to digest some of the information that I was exposed to. A blog post by one of the other participants, Prosthetic Medic (another Louisvillian) summed up nicely where the emphasis of the conference was concentrated on–the patient. In his first post regarding the conference he talks about coming to the understanding that his diagnosis is “chronic”, in other words, his leg will never grow back. Yet as gut wrenching as that fact may be, his diagnosis does not define him. The conference helped him to understand the difference between surviving and living. The epatients at the conference have chosen the latter and they do so with gusto.
To get a sense of what the truly empowered patient can do here are some other terrific posts by MedX’s patient attendee’s:
“When I have to go to the bathroom in the middle of the night, I walk like an 80 year old woman. Dr. Nieder, I am only 48. There is something seriously wrong!” Lately, this complaint comes one or two times a week from peri-menopausal women. (Peri=around so peri-menopause is defined as around the time of menopause). Similar to my recent Hot Flash post, I started thinking about their complaints from my own experience. It hit me–I don’t ache like I used to. Yes, I exercise more now than in my mid-40’s but not as much as three years ago yet I don’t ache as badly as then. Why? Research reveals the likely cause of the aches is estrogen deprivation but I cannot find studies that have been done on younger women. And most of the studies are more anecdotal comments about the “anti-estrogen” effect of medications given to women with breast cancer. Many of those patients are unable to tolerate the therapy because their joints hurt too badly. In addition, all the studies on joint pain and estrogen loss have been done on post-menopausal women.
What dawned on me is that the reduction in pain occurred about the same time I started sleeping again and the hot flashes were reduced. An “AH HA” moment indeed. But I’m an “N of one” which means my experience is unique to me and not statistically significant. I am only surmising that my patients will also improve based on my experience and the fact that my older patients are not complaining as much as my peri-menopausal patients are. Let’s hope these studies get done so I can give my patients facts instead of just life experience.
In the meantime, keep walking and staying optimistic. It will get better.
1. Qamar J. Khan, Anne P. O’Dea, and Priyanka Sharma, “Musculoskeletal Adverse Events Associated with Adjuvant Aromatase Inhibitors,” Journal of Oncology, vol. 2010, Article ID 654348, 8 pages, 2010. doi:10.1155/2010/654348
2.Estrogen alone and joint symptoms in the Women’s Health Initiative randomized trial. Chlebowski RT, et al. Menopause. 2013 Jun;20(6):600-8. doi: 10.1097/GME.0b013e31828392c4.
This short post is mainly directed at my menopausal patients. It came to me last night about 3 am. As it happened that was the second time I’d awakened for no obvious reason until a few moments later it seemed the room temperature had risen 10 degrees. No wait, MY temperature had done that. Having nothing better to do until my temperature normalized (besides kicking off all my covers much to my husband’s dismay) it occurred to me, “this’ll make a great blog post!”
For those women struggling through the peri-menopausal period, better known as the meno-fuzzies, I have good news and bad news. Your cognition issues are real. That’s the bad news. The good news is that this too shall pass and most of your brain function will return. You will also have fewer hot flashes and there will come a time when you will once again sleep through the night. Now that I’ve made it to the other side I can state with assurance that walking into rooms in my house only to discover that I have NO idea why I’m there are fewer now. No longer do I fear bursting into flame in the middle of my office. The bad news? Even though I’m in my late 50’s I still awaken in a sweat two or three times a week. And I have 80 year-old patients that assure me that they too still occasionally flash.
Are your fears about your memory well-grounded? Yes, but it will come back.
Is your insomnia as bad as you think it is? Yes, but you will sleep again.
Are you as irritable as your family says you are? Maybe, but exercise helps.
Are you gaining weight because of the menopause? No, that’s more of the aging process.
Should you take hormones? That’s a very individual question and best discussed with your doctor in the office. Every woman needs to make that choice with her own needs and risk factors in mind.
1. Cognition and mood in perimenopause: A systematic review and meta-analysis. Weber MT, Maki PM, McDermott MP. J Steroid Biochem Mol Biol. 2013 Jun 14. pii: S0960-0760(13)00111-8. http://www-ncbi-nlm-nih-gov.nihpublic-proxy.stanford.edu/pubmed/23770320
2. Physical Activity, Menopause, and Quality of Life: The Role of Affect and Self-Worth across Time. Steriani Elavsky, Ph.D. Menopause. 2009; 16(2): 265–271. http://www-ncbi-nlm-nih-gov.nihpublic-proxy.stanford.edu/pmc/articles/PMC2728615/?report=classic
In follow up to an ER visit for a new onset migraine headache, my patient casually asks if caffeine could be playing a part in his headache and blood pressure issue. As we reflected on that possibility he admitted to drinking at least 64 ounces of diet, caffeine-containing sodas daily. WHAT?!?!? Not only can caffeine raise both blood pressure and pulse but if one already has hypertension, caffeine may elevate it even more than in a normal person. When he presented to the ER with an excruciating headache and extremely high blood pressure he underwent a head CT scan that was normal and it was theorized that the blood pressure was due to the headache, perhaps a migraine. The problem I had with the diagnosis is that people do not typically present with their first migraine headache in their mid-40s. The ER started him back on blood pressure medication (he had been able to stop it about a year ago with diet and exercise) and sent him back to me for followup. So in my office we began to explore the biggest question: was the pressure causing the headache or the pain from the headache causing the blood pressure? In the time between the ER and our office visit he realized that he got a headache if he went a few hours without caffeine. We developed a plan for slowly stopping all caffeine products before ordering any more expensive tests. Since his pressure was still elevated, his blood pressure medication was increased.
Over the course of a month he brought his exercise level back to 2012 levels (before he let work take over his schedule) . He reduced and came off the caffeine with the exception of one cup of green tea in the morning. He took the bigger medication dose just one day but it made him dizzy. Soon he found the 1/2 dose too much. By the time I saw him one month later his weight was down, his blood pressure was normal and he was completely off medication.
Moral of the story? First of all, caffeine can be beneficial as can working hard. However–all things in moderation. Secondly, what you put in your mouth (or don’t) and how much you exercise you do can sometimes work as well as a pill. And there are no side effects!
1. Hypertension Risk Status and Effect of Caffeine on Blood Pressure. Hartley, Terry R., et al. Hypertension.2000; 36: 137-141. http://hyper.ahajournals.org/content/36/1/137.full