Inkwell: Authors and Artists
those Andropovian bongs (rik) Tue 13 Dec 11 09:45
My wife and I, both with Kaiser, were discussing this last night. We miss our old school GPs from 20 years ago, who were like friends of the family, and knew our histories by heart. At Kaiser, we're processed by an overworked doctor who has 20 minutes to make sense of our problems and plan a strategy. On the plus side, they have our entire histories in searchable form right in front of them during the appointment, and they're great at dealing with us by email. I have a history of melanoma, and my wife spotted a mole that looked questionable on my back one morning. I couldn't manage to get a good look at it myself, using a mirror. At that point, under the old system, I would have booked an appointment with my GP, he'd have looked at it, and then booked an appointment with a dermatologist. Then, a few days later I'd have seen the dermatologist, and finally gotten some clarity on what I was dealing with. Instead, I set the timer on my iPhone camera and spent about 5 minutes getting a good shot of it, and the look of it bothered me as well. So I emailed it to my doctor at Kaiser, who told me that it didn't look like a problem to him, but to be sure, he emailed it directly to dermatology and they brought me in for a look. And he was right. The bottom line is that I spent a lot less time worrying about it than I would have with my old GP.
Joe Flower (bbear) Tue 13 Dec 11 09:52
Rik, you're the poster boy for the empowered e-patient. Try to transpose that brief little story to a traditional system - not just non-electronic, but fee-for-service and so many obstacles emerge.
Nancy Finn (nfinn8421) Tue 13 Dec 11 11:07
These stories point out the complexities of new and emerging technology - trial and error. Unfortunately in health care we are dealing with people's lives, feelings and emotions and that makes it even more difficult. Kaiser was an early adopter of digital communication technology for health care and goodness knows they have had their bumps along the road. After reading Lena's story we know they still do. That is why it is so important for patients/consumers of health care, who are markedly absent from the planning discussions, to let their health care providers know how they feel about the way their care is addressed and delivered. It is when patients like Rik take the initiative, use their ingenuity and strive for a collaborative approach, that the result will be better, safer, more cost effective health care for all of us.
Paulina Borsook (loris) Tue 13 Dec 11 21:27
in these kinds of discussions, there is almost never talk about - concierge medicine - integrative practitioners both of which are sought precisely because patients want time, caring-for, focus, attention. my perception is that these are growth areas in healthcare --- and my experience with these practitioners is that the infliction of e-whatever (as demanded by medicare or what insurance they might take) is just that --- an affliction. when i saw my optometrist for my annual, i was annoyed at having to fill out an electronic form, duplicating basic info i already knew he had and which didnt allow for the visual peculiarities that are the reason i see him and not, say, costco's doc-in-a-box. what he told me at the exam is that insurance is driving him to have to fill out these forms, which arent hellpful --- and my actualy chart, with my actual history, is still paper. because -that- contains the useful info he needs. this guy isnt anti-technology --- i get custom cad-cam enabled driving glasses (iZon) from him (mapped from a picture of my eyes) and he uses a digital scanning technique --- no dilation required --- to do the depth examination of the eyes. and he stores this, so he has archives to compare.
Nancy Finn (nfinn8421) Wed 14 Dec 11 05:03
Paulina, I am not exactly sure whether your are indicting all digital communication technology in health care; endorsing concierge medicine; or discussing the obstacles that doctors face because they have to deal with a bureaucratic system of insurance regulations. So I will take these issue one by one. Concierge medicine is wonderful, personal, patient centered for those who can afford to pay for it. The operative words here are those who can afford it. That leaves out the great majority of people so it does not resolve health care issues for most of us. I totally agree with you that filling out the forms time and again in the doctor's office makes no sense whatever. I do not believe this is something demanded by insurance companies. It is really a function of how the doctor organizes information, stores it and processes it for insurance purposes. Goodness knows that all doctors have to process far too much information for insurance purposes. Some have more efficient internal systems than others. That said, the demands on doctors today to process information and paperwork is outrageous and clearly takes their time away from more personalized patient care. As to e-health, this is not something demanded by the insurance industry. It represents an evolution in the way information is processed and follows the path of every other industry that we deal with that has converted to digital record keeping. The flow of information in medical practice is so immense that digitizing records is essential for accurate, continuous care. This is particularly important when patients deal with several providers and their information ,must be available at the point of care. Unfortunately we are in the beginning stages of digitization of health care records and things do not flow as smoothly as we would like them to. I am sure that your optometrist has advanced technology that he uses for diagnosis and treatment. that is where health care has put its focus for many years and rightfully so. Aren't we lucky to have these wonderful tools that provide us with better care. However, we need the digital communication tools as well to insure that all of our doctors have full information on us that is easily stored, accessed and can be reviewed when we are receiving care.
Jon Lebkowsky (jonl) Wed 14 Dec 11 05:46
I worked with the late Dr. Tom Ferguson's e-Patients Working Group, a set of physicians, patients and others who worked with Tom in exploring and refining his ideas and producing the seminal white paper, "e-Patients: how they can help us heal healthcare." (http://e-patients.net/e-Patients_White_Paper.pdf) This is the same group that founded the Journal of Participatory Medicine and the Society of Participatory Medicine (SPM). I met Tom when he was publishing the magazine "Medical Self-Care" in the 80s, and in the 90s he showed up at some of our early EFF-Austin meetings, the only place you could go in Austin at the time to talk about the Internet. Tom could see that the Internet would bring a democratization of knowledge and support for communities of affinity, and he was clear how this would have an impact on healthcare, especially regarding his focus on what patients could do for themselves. (He was, incidentally, editor of the health sections of the Whole Earth Catalog.) The data gathered by physicians and hospitals, how and why the gather it, how they use it, whether it's accessible to the patient or not - this are all important issues to consider. e-Patient Dave deBronkart, a cancer survivor and vocal advocate of participatory medicine, had a great talk on the subject, "Gimme My Damn Data." (http://www.slideshare.net/ePatientDave/gimme-my-damn-data-epatient-daves-keyno te-at-medicine-20-2009) Eventually we would hope that the patient and all his healthcare providers could be part of an ecosystem wherein they all have access to the same data, digitized and stored with access protocols that facilitate secure sharing. But another, I think more compelling aspect of participatory medicine and the evolving concept of the e-patient is about technology-mediated collaboration and access to knowledge. There are many examples of online patient communities, the members of which are sharing information about their specific conditions and treatments, as well as knowledge they've gained through online (and offline) research. An example: the Association of Cancer Online Resources (ACOR - http://acor.org), the founder of which - Gilles Frydman - was also a member of Tom's working group and a cofounder of the SPM. As an online community proponent and practitioner, I was drawn to that aspect of Tom's work, and his desire to make effective use of blogs and other forms of what we've come to call social media. Empowered patients, further empowering each other.
Joe Flower (bbear) Wed 14 Dec 11 06:38
Lots to discuss here. > concierge medicine, integrative medicine There is nothing in either of these models that is in contradiction of using modern technologies to communicate, to gather information, to engage. In fact, all the tech used correctly will enable a far more intimate, direct, helpful relationship between doctor and patient. The example you give, Paulina, does not show that tech is bad, it shows that poorly-implemented tech is bad. And there is a lot of poorly-implemented tech out there that gets in the way of real relationships, rather than mediate them (the way, for instance, we are having a relationship right now, and have for years, which would never have existed without this medium).
Joe Flower (bbear) Wed 14 Dec 11 06:43
And by the way, Nancy, "concierge" medicine is not just for "those who can afford it." The interesting new development is lower-priced concierge medicine. Its practitioners don't call it that, but it looks to me like exactly the same thing. They call is "direct pay" medicine. Some cost as little as $30/month for all your primary care, including same-day urgent appointments and after-hours phone assistance, all that stuff. One of the factors that makes this possible is the very technology that we are talking about here: Inexpensive or free software that can run an entire medical practice, including letting patients make their own appointments, and handling all the billing, everything.
Joe Flower (bbear) Wed 14 Dec 11 06:50
Hey, Jon! You knew DocTom? One of my heroes, a real pioneer of this stuff, a serious visionary who was out beating the drums for doing things differently and better, even 25 years ago. By the way, I may be a little scarce in this conversation over the next few days. Tomorrow morning we are getting in the Prius and setting off for the Tropic of Cancer, about 1500 miles south. So I will be checking in when I can, but that may be no more than once a day.
Joe Flower (bbear) Wed 14 Dec 11 06:59
Excellent talk from e-patient Dave you shared, Jon.
Paulina Borsook (loris) Wed 14 Dec 11 08:50
my point is that yes, hypothetically and in some cases actually emedicine has its place --- but i have been hearing about this for two decades (thinking about an article i wrote for silicon graphics'inhouse magazine about telemedicine, etc etc --- back in the mid90s; a review of dertouzas' book on emedicine in 2001, etc etc). hell, the 1st md/acupuncturist i saw in the 1980s used his laptop to write up his notes/our discussions. my comment was about the tools-makes-rules problem, and how technology so often gets oversold as the solution when so often, the real prob is elsewhere. we -all- know the prob of corrupt and out-of-date and inaccurate database entries. (just to bring up one example). data not being readable after a certain point. i am all in favor of outcomes-based medicine. but even there, there is the issue of who designed the study and what questions were asked of what populations, etc etc. i tend to get weary about about every new scheme that wants to substitute data for information, knowledge, wisdom --- and the really good practitioners i know rely on diagnostic intuition --- which may be a skillset younger practitioners have never been allowed to develop.... anyway, i dont usually chime in with my well-known technoskepticism, but...
Joe Flower (bbear) Wed 14 Dec 11 09:15
Any tool set can be used stupidly. Powerful tools can multiply the stupidity. Healthcare powerfully needs to work through how to use these tools so that they give us enormous leverage to do better the things that we need to do. The time to have these discussions is right now, while things are so fluid in healthcare, and everyone is ramping up their use of these tools. This is a time of great urgency to have these discussions, and guide healthcare decision-makers in how to think about these tools.
Paulina Borsook (loris) Wed 14 Dec 11 09:36
coupla more dyspeptic thots: - there seems to always be budget for IT, even if not executed well. - IT practically always seems to be used to cut headcount and decrease quality (the example of <lendie> here is apt) - of course, i believe in the value of patient communities - as the founder of Sim City said to me years ago 'ideas are cheap. implementation is everything'. and to be honest, the idea of one central database of my health info scares me and also to be honest, the instances in my life are too manifold where getting ahold of the original paper document or record was what was needed (nicholson baker has had good things to say about this).
Jon Lebkowsky (jonl) Wed 14 Dec 11 11:54
Paulina, glad you're in the discussion. Technoskepticism is warranted. We've discussed at length within the Society of Participatory Medicine how the tools are just tools, and how technology by itself won't fix what's broken about healthcare. That said, there's real promise in the potential for healthcare innovation leading to better communication, better care, more effective coordination of treatment. You say you're concerned about having all your healthcare data in one place, but a healthcare provider's access to your complete record could save your life. There's been some talk about having clearinghouses that hold the data and coordinate treatment, in which case you wouldn't have to provide full access to all healthcare providers, just to the coordinating entity. That could be another layer of complexity that could be mediated by technology. Joe, I figured you knew Tom. We wouldn't be where we are without his tireless dedication to his belief that patients should be, as he said, empowered and enabled. One question that comes up a lot, thinking of Paulina's technoskepticism, is digital divide - not every patient has access to "enabling" technologies, so how are they empowered? (I'll cover for you while you're on the road.)
Nancy Finn (nfinn8421) Wed 14 Dec 11 14:26
Access to, and use of technology, is not a condition of patient empowerment. I would contend that technology provides the tools but the tools that could empower a patient can just as easily be print books sitting in a public library where an empowered and engaged patient can look up a health care issue, as differentiated from conducting a Google search; it can be a community of friends or acquaintances who are going through a similar health care experience who meet to discuss their concerns e.g. cancer as differentiated from a virtual social network; it can be a patient seeking counsel from a local pharmacist to better understand the medications that have been prescribed, as opposed to that patient going to the web and looking up the medication and reading about the side effects, the proper dosage and the pros and cons of taking that drug. Patient empowerment is the personal act of seeking answers to important health care questions and using that information to actively participate your own care and collaborate with a health care team. The technology facilitates that search by making information easily available and communities accessible. But it is not a requirement.
Paulina Borsook (loris) Wed 14 Dec 11 16:50
and lets not forget the datasmog prob; practitioners being overwhelmed with emails; etc etc. we all know technology is in itself neutral, has benefits and costs, and can be deployed for good and bad.
Gary Greenberg (gberg) Thu 15 Dec 11 03:13
And here's a perfect, and relevant, example http://www.nytimes.com/2011/12/15/health/as-doctors-use-more-devices-potential -for-distraction-grows.html?_r=1&hp
Nancy Finn (nfinn8421) Thu 15 Dec 11 05:49
We cannot make the mistake of putting the blame for irresponsible people and their bad behavior on the availability of tools of technology that were designed to facilitate communication, not destroy lives. There was a wonderful doctor and mother of two children who lived in my town. She chose to text while driving and not to wear her seat belt. She was in a car accident where not only was she killed, but she injured a Nanny and a baby. Do we blame the availability of the phone on which she was texting as the culprit in this instance? Do we blame the headset that the surgeon was using irresponsibly in the OR. We cannot indict technology because of the poor judgment of individuals. We can make rules about its use during the hours when a provider is working. From the NY Times article it is obvious that hospitals need to pay attention to these issues. As to the datasmog of too many emails, there is etiquette around use of email that I outline in the book. All doctors who agree to email with their patients should communicate these ground rules They include letting people know what subjects are appropriate for email, time frames and expectations regarding responses to email and frequency of communicating. The doctors I interviewed for the book, and the anecdotal stories they provided all indicate the efficiency both for the patient and for them, as opposed to being overwhelmed. Prior to the invasion of all of the digital technology, plenty of doctors would interrupt their patients with telephone calls. Rudeness, unprofessional behavior and total irresponsibility when using technology tools is a serious matter for both the HR department of health care institutions and for an empowered patient who should speak up and not tolerate a provider who is not giving you the full attention you deserve.
Jon Lebkowsky (jonl) Thu 15 Dec 11 08:21
A key issue in the participatory realm is getting physicians and other healthcare professionals to acknowledge and adopt participatory principles. Many are already there, but many are far from getting there. How do we make it happen? Do medical schools get it? Do they teach how to engage and include the patient?
Nancy Finn (nfinn8421) Thu 15 Dec 11 11:30
The conviction that teaching communication and patient-centered care should be part of the medical school curriculum is gaining acceptance. Getting health care providers including physicians, nurses, therapists who are practicing to: (1) understand and (2) then practice participatory medicine is a huge challenge that hopefully the Society of Participatory Medicine will tackle. Someone needs to lead the charge.
Paulina Borsook (loris) Thu 15 Dec 11 15:46
good healthcare providers have always been 'participatory' i.e. listening to their patients --- that many arent is a function of how human nature doesnt change
Nancy Finn (nfinn8421) Fri 16 Dec 11 09:11
I would agree that the good providers have always listened to their patients, however, there was a culture in medicine where the doctor's conclusion was the only way to go and patients accepted that. As patients have become more empowered and educated they have found their voice and are challenging their providers to be more open and amenable to various options. However, we have a long way to go before patients and providers learn how to collaborate, communicate and participate as a team.
Paulina Borsook (loris) Fri 16 Dec 11 09:25
true otoh i took a two-day seminar on psychoneuroimmunology back in the mid 90s, offered by two profs from ucla. and even -then-, the studies showed that active engaged patients who did their own research and advocated for their own care and gave constructive feedback/pushback ---- had better outcomes. so this has always been true...
Gail Williams (gail) Fri 16 Dec 11 12:32
This makes me think of several questions. Just throwing them out. This is very interesting. Is that because stronger, sharper people are already more likely to have a better prognosis than those who are weak, discouraged, unable to think clearly? What does education and literacy -- outside of the computer side of the equation -- have to do with health outcomes? If you are weak, in pain, feeling dim, fuzzy and discouraged, and wish you could take on more responsibility, how can you best work with a care-giver, family member or other advocate to be your proxy? Would a book like this help that person, or is that another book that is waiting to be written?
Nancy Finn (nfinn8421) Fri 16 Dec 11 13:55
Gail, Taking your questions one at a time (and this is just my opinion, not scientific evidence) 1. I do believe and materials I have read indicate that a positive attitude is a very important element in overcoming illness. Being a strong, sharp personality does not always mean that you can think clearly when your own health is impacted. However, if you are able to remain sharp and think positively you could overcome a health issue more easily than someone who is depressed and discouraged. It does depend upon the illness and many times these conditions are beyond the control of the individual. 2. In this era when health information is everywhere and there are many choices that have to be made, an individual who is literate and seeks to educate himself or herself regarding a health issue is better equipped to make intelligent choices about treatment and better equipped to work collaboratively with the health care team. This could result in a better outcome. Unfortunately there is never any guarantee and there are times when options and outcomes are out of the hands of the patient or the provider. 3.I advocate in this book that every individual who is too unwell to advocate for him or her self needs to appoint a family member, friend or social worker (and hospitals have people for this purpose) to be that advocate, stay on top of what is being done and represent the patient's best interests and desires. 4.My mission in e-Patients Live Longer is to help people understand how to work within the system to improve communication with health care providers, use the tools we use every day - email, the Internet, smart phones, databases, to empower ones self to take a more active role in your care before you are too ill. I have tried to provide all of the guidance for becoming an empowered patient: questions to ask your physicians; criteria for choosing a provider and a hospital; smart phone apps that can make a difference in managing health issues; considerations regarding privacy of your health information and for choosing a health insurer; best websites to use for information and to find communities, etc. If you are weak, in pain, feeling poorly and discouraged you are probably not going to sit down and read any book. It is my hope that every individual who has to deal with a major health care issue (and we all face that possibility in our journey through life) reads this book before confronted with a major health problem. I do think that this book has everything needed to help people become participatory patients able to be more effective in managing their health care. There is another book that I am working on: e-Patients Make the Right Choices which is all about lifestyle choices we make to stay healthy. It is quite a different topic with a different purpose.
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