Inkwell: Authors and Artists
Jon Lebkowsky (jonl) Wed 7 Dec 11 17:40
We've really been looking forward to this conversation about healthcare and participatory medicine. Our guest for the next two weeks is Nancy B. Finn, a writer and thought leader on the impact of digital communication onorganizational behavior, healthcare and patient care. She is the author of _e-Patients Live Longer, The Complete Guide to Managing Health Care Using Technology_, published by iUniverse. This book, targeted to baby boomers, senior citizens and individuals who suffer from chronic conditions illustrates how simple communication tools including the Internet, email and smartphones, enable patients to be empowered, engaged and educated. She has also authored _Digital Communication in Medical Practice_ published by Springer, and targeted at a physician audience, and two books on business and digital communication: _The Electronic Office_, published by Prentice Hall and _Writing Dynamics_ published by the CBI Division of Van Nostrand Rheinhold. Ms Finn is the Founder and President of Communication Resources, a consulting organization that offers advice and training workshops on the management of patient information and the transition to patient-centered care, For several years she held senior corporate marketing/marketing communication positions in high tech, publishing and financial services. She has also taught presentation skills workshops, communication and new media courses at universities in the Greater Boston area including: Boston University, Bentley College, Suffolk University and Leslie University. She contributed a chapter: Finn NB. Communication: The Key to Good Medicine, Nash DB, Skoufalos A, Hartman M, Horwitz H, eds. _Practicing Medicine in the 21st Century_. Tampa, FL: American College of Physician Executives; 2006. Ms Finn is on the Board of Overseers of Mount Auburn Hospital, an active member of the Society of Participatory Medicine, and writes the Media Watch column for the Journal of Participatory Medicine. She is on the Health Advisory Board of the Massachusetts Technology Leadership Council. She holds a Masters degree in Education and a Bachelors degree in journalism from Boston University. Ms Finn has been a speaker at many national forums on communication technology topics, writes a healthcare blog: www.healthcarebasics.blogspot.com. and is a contributor to the blogs e-patients.net, and Trusted MD. She is the editor of a monthly e-newsletter, Your Health Care Advisor. WELL member, healthcare analyst, and futurist Joe Flower will be leading the conversation with Nancy. Joe has explored the future of healthcare with an extraordinary variety of organizations across healthcare - professional associations, the World Health Organization, the UK National Health Service, the Defense Department, pharmaceutical companies, device manufacturers, health plans, physician groups, and numerous hospitals. He is a columnist for the American Hospital Association, and the author of hundreds of articles and the forthcoming book, "Healthcare Beyond Reform: Doing It Right For Half The Cost." His website is at http://www.imaginewhatif.com/. Welcome, Nancy and Joe!
Joe Flower (bbear) Thu 8 Dec 11 05:44
Hey, Nancy! Let me add my welcome, and thanks to you for being here with us these two weeks. Your book is titled with a bold assertion: "e-Patients Live Longer." Is this true? Is there evidence for it? Or is it something that makes sense and should be true? Do people who regularly use electronic communications about their health actually live longer?
Nancy Finn (nfinn8421) Thu 8 Dec 11 09:52
Thank you to Inkwell and to you, Joe for this opportunity to talk about this important and timely topic for all health care consumers. Let me clarify that the "e" in e-Patients does not refer to "electronic" but to an empowered, engaged and educated health care consumer. I admit that there is not statistically significant evidence that e-patients live longer. However, the major thesis of the book is that the digital tools of communication, email, the Internet, smart phones, secure portals, are enabling tools for to help health care consumers become empowered, educated and engaged so that they are more equipped to proactively deal with their health issues and interact with their health care team for better, safer care.
Joe Flower (bbear) Thu 8 Dec 11 14:43
But which is the chicken, which the egg? An empowered, engaged, educated consumer certainly is going to do better, technology or not, and technology offers a panoply of tools that were not there 20 years ago. But can the reverse happen? Do the tools help create a more engaged, empowered, educated consumer?
Pause for station identification (jonl) Thu 8 Dec 11 17:50
You can link to this conversation using this short URL: http://tinyurl.com/Finn-inkwell If you're reading this conversation, and you're not a member of the WELL, you can send questions or comments to inkwell at well.com.
Nancy Finn (nfinn8421) Fri 9 Dec 11 04:47
There is no question, (and this is substantiated by research, www.pewinternet.org) that most of us are using digital communication tools daily to communicate with colleagues and friends for business and social interactions,and many of us to seek health information. However,when it comes to the question of an individual taking charge of his or her own health care i.e. becoming empowered, it is the individuals' deliberate choice that makes that happen and not the technology. Once the individual makes that choice, the technology facilitates, helping that patient become educated and able to have the full information needed to partner with the health care team to make treatment decisions, manage chronic illness and take an active role. You are absolutely correct that we do not need technology for a patient to be empowered, engaged and educated. I do believe,that by virtue of being available, the technology helps us move us in that direction.
Joe Flower (bbear) Fri 9 Dec 11 08:26
Give me an example. How do specific technologies help people become more "empowered, educated, and engaged" with their health?
descend into a fractal hell of meta-truthiness (jmcarlin) Fri 9 Dec 11 11:35
I'm also interested in your answer to that question. I consider myself pretty empowered and do a lot of research before and after visiting the doctor. For example, I woke up dizzy one morning and rather than go to the ER, I found that I had BPPV, benign paroxysmal positional vertigo, found the Epley maneuver online and fixed myself up. But what if I had been wrong? I'm interested in hearing details so that I can more intelligently calibrate between being empowered and trying to be my own doctor when that's not a good idea.
Nancy Finn (nfinn8421) Fri 9 Dec 11 12:45
Remember I said that people empower themselves so the technology cannot make that happen. However, here are many examples where technology helps people become educated and engaged and by contributing to their understanding of their illness or their treatment options, can empower them to make better health decisions. In Chapter 8, Web Resources I tell the story of a man who was diagnosed with prostate cancer. As has been widely publicized, there are many approaches to treating prostate cancer including: just radiation therapy, radiation followed by surgery, surgery alone or hormone treatments. There are also several different forms of surgery, some more invasive with more residual impact than others. Even after seeking a second opinion this individual was confused about which treatment to choose. His doctors could only present the choices. They could not make the decision for him. By doing extensive research on the Internet reading studies and opinion pieces at several cancer sites and engaging in discussion groups with individuals who had been through prostate cancer, he felt knowledgeable enough to make a decision. In this instance, Internet technology and social networking engaged him proactively to seek the answers to his dilemma and educate him about all of his options so that he could choose the one that best fit his situation. There are hundreds of similar examples where the combination of Internet research and social networks that include health discussion forums help individuals find vital answers which their own doctors cannot supply. The social networks also provide comfort by enabling individual to become engaged in a community where they can talk with people who are experiencing similar issues. In a very different example your have the proliferation of health apps on the smart phone which fosters empowerment, and requires people to engage. There are approximately 12,000 health apps (at the most recent tally) that enable and educate all smart phone users who are interested, on issues related to diet, fitness, medical emergencies and medical monitoring. Smart phones are of particular use to empower and engage individuals with chronic illness, helping them monitor their vitals which they can send directly to their doctor, a diabetes educator,or physician assistant, and track their progress. Smart phone technology, perhaps more than any other single technology has revolutionized the way people engage in their health. Over 83 percent of all Americans own some kind of cell phone according the Pew Institute research and 9% of those mobile phone users have health applications on their phones. These numbers are growing. Researchers predict that by 2015 there will be 1.4 billion smart phone users worldwide and 500 million of them will use health applications.
Nancy Finn (nfinn8421) Fri 9 Dec 11 12:58
My answer to Jim's questions is that although it is wonderful to feel empowered and I obviously encourage patients to research issues on the Internet and take charge of your health, I always advocate that communicating with your physician is essential to insuring your safety. I also have had that same vertigo from time to time and use the method you found on the Internet with much relief. However, I caution from personal experience that those episodes of vertigo could be very similar to other more serious disorders so it is really dangerous to self-diagnose and treat.
Joe Flower (bbear) Fri 9 Dec 11 13:07
Isn't the treatment dispositive, though? I mean, if you have vertigo, and the Epley Maneuver makes it go away and not come back, then what you had was BPPV, not something more sinister. (I am not a doctor, of course, and neither is Nancy).
Joe Flower (bbear) Fri 9 Dec 11 13:11
Take a look at this video, Nancy, I think you'll like it. I think it's making your point, and I would love your thoughts on it. It's from the Worrell design firm. The second half of it shows off a prototype that is kind of a hybrid of a dedicated laptop hooked directly to an advice nurse, combined with a home testing and health kit. <http://youtu.be/a23CH6D8f2o>
Nancy Finn (nfinn8421) Sat 10 Dec 11 09:19
Joe, Part of being an empowered patient is knowing when and how to communicate and work more closely with your providers in a partnership where issues are discussed and resolved together. An empowered patients should know that making medical decisions based on solutions you find on the Internet, which may sound reasonable, is not a wise thing to do without checking them with your medical team. Vertigo, which is basically feeling like the room is spinning when you go from a prone to a sitting position, can be very similar to other conditions where the predominant symptom is feeling dizzy. I would contend that as an empowered patient who has developed a good communication system with your medical provider, that it is in your best interest to take the necessary steps to check-in with your provider for confirmation that you are doing the right thing.
Nancy Finn (nfinn8421) Sat 10 Dec 11 09:20
<scribbled by nfinn8421>
Nancy Finn (nfinn8421) Sat 10 Dec 11 09:24
Sorry, the video is no longer available so I cannot respond to it.
Joe Flower (bbear) Sat 10 Dec 11 09:53
Ah, here: http://vimeo.com/29485756 It's 7 1/2 minutes or so. It starts with Insights for the ER. The part about the e-patient experience starts about 4 minutes in.
Nancy Finn (nfinn8421) Sun 11 Dec 11 06:33
I have two comments: First of all what goes on in trauma medicine where a team of doctors and nurses are focused on keeping a single patient alive, would be difficult to cost-effectively replicate in the general practice of medicine because doctors and other health care professionals are dealing with droves of patients, often several at the same time and cannot provide the intense focus on each one. However, changes are coming. With the increasing spread of telemedicine, portrayed on the video, more and more patients will be seen remotely using home monitoring kits that include blood pressure cuffs, thermometers, stethoscopes, and other tools that can transmit vitals through the telephone to a health care professional I cover this extensively in chapter Six: Receiving Care across Geographic Boundaries, where I describe in detail all the facets of telemedicine including teletherapies of all kinds: speech, physical therapy, mental health counseling, and home telemonitoring. The increasing use of smartphone health apps that include many of these monitoring tools that transmit health beat blood pressure, blood sugar, weight, temperature, pulse, over the phone to a health care professional, as well a first aid kits that help people know what to do in an emergency, will enable at home patient centered care to take place, as shown in this video, with the caretaker at home and the professional at a distance giving instructions and constantly monitoring the patient. http://healthcarebasics.blogspot.com/2011/11/smartphone-health-care-apps-e-pat ients.html. Given the shortage of primary care physicians in this country, I do believe that over the next ten years we will see more of medicine delivered to patients using these tools. If done well, this will reduce the number of unnecessary emergency room visits, reduce the cost and improve the quality of health care for all of us.
Joe Flower (bbear) Sun 11 Dec 11 16:19
I certainly agree. But the "if done well" part is a pretty big "if." Where do you see it done really well? What do they do better? What allows/encourages those places to really do it well, while other places do it poorly or not at all?
Lena M. Diethelm (lendie) Sun 11 Dec 11 21:55
My husband spend nearly 5 months in the hospital this year (kaiser redwood city ca). I observed a lot about all this e-crap. The staff used either computers in the nursing station itself or mobile workstations. the mobile stations did not use laptops. they were large, awkward and in everyone's way most of the time. they were a huge pita physically to deal with. they could be used on battery charge or corded. They were used for charting, of course. but because there weren't enough to go around, the staff carried pen/paper with them to make notes about each patient as they made rounds (or they made mental notes to what accuracy who knows) and then later entered the information in the system. (keep in mind, no matter what, that the hospital (and I'm sure this is true of most) was understaffed and the staff working overworked. It affects everything). The staff spend most of their time interacting with computer and relatively little time interacting with the patient. The understaffing meant they didn't have time to spend with patients. It also meant they didn't notice things they might have if they actually looked at the patient and examinied the patient and then actually thought about what they'd observed. (to be continued)
Nancy Finn (nfinn8421) Mon 12 Dec 11 05:34
Lena, I am sorry that your personal experience in the hospital was not a good one. I hope that your husband is recovered or better now and I agree that the best option concerning hospitals is to keep out of them and stay healthy. However, as you stated, hand written notes are really questionable in terms of accuracy and we do need computers with instant information at hand when treating patients. Their existence and even obtrusion into the health care setting clearly does not excuse poor interaction between the staff and the patients, nor will anyone contend that computers resolve the issue of understaffed, overburdened hospital personnel who are not given the proper training on the computer which could help them become more efficient and more able to spend more time with the patient. This is a time of transition when health care workers and administrators are learning how to apply the technology to make the patient experience better, but we are not there yet. It does not excuse your bad experience but it is a reality. Think of where we would be without computers and if everything was still manually entered into the record. The pace in health care is such that there would be so many errors and doctors would be so handicapped without the ability to quickly access medical databases for best practices information. I would be interested in how you would make this scenario that you described better.
Nancy Finn (nfinn8421) Mon 12 Dec 11 05:51
Joe, We are just at the tip of the iceberg with telemedicine and home monitoring. I do see some good examples happening in Boston through Partners Health Care for ongoing monitoring of chronic illness among the elderly and other home-bound citizens. The VA system is far and away ahead of the curve when it comes to using cutting edge technology (but of course they have our tax dollars to pay for these new technologies that are available to our veterans.) There are many rural areas in the country that I describe in the book where telemedicine is used to deliver at home services using videoconferencing and home monitoring equipment for example: through Integris Health in Oklahoma, Marshfield Clinic in Marshfield Wisconsin, St Alexius Telecare network of North Dakota, Northwest Telehealth in Spokane Washington. I think that telemedicine will spread as the applications for home monitoring continue to be rolled out, improved and become more cost effective. The is a complex issue because it is so dependent upon the health insurers and Medicare agreeing to compensate for these services. They are just beginning to realize that it is a lot less expensive to reimburse telemedicine services than to bring people in from great distances to the hospital where the costs of care are so much higher. As far as the example in the video of a patient being examined at home for an illness instead of going to a clinic or physician's office, I do not see this happening yet and I have to wonder how extensive this will become. One of the reasons that retail clinics have sprouted around the country is to offer people 24/7 coverage for simple medical issues - for example, the child with the fever and stomach ache today might be brought into a retail clinic, as a much less expensive alternative to taking the child to the ER.
descend into a fractal hell of meta-truthiness (jmcarlin) Mon 12 Dec 11 11:31
That comment about the doctors in the hospital reminded me that my doctor spends more time entering things into the computer than he used to do writing in the paper chart. That's OK if and only if the result is better results down the line. I can see the doctor losing important details in a very thick paper chart that would show up online. If that's the case, then the up front work will be worth it. But I want to see evidence that computerizing is really improving outcomes. Does that evidence exist?
Nancy Finn (nfinn8421) Mon 12 Dec 11 13:03
Jim, There have been many studies but none that I could find that have definitively declared that electronic health records result in better clinical outcomes. We all know that delivery of high quality primary care demands that providers have the necessary information at the point of care. Years ago the average patient was taking a couple of medications and an office visit rarely resulted in an order for tests. Today, the average patient over the age of 55 is on 10 or more medications and one or more tests are usually ordered at an annual check up. Tracking all of that information on paper becomes virtually impossible for the primary care physician. The ability to transmit this information to specialists that a patient might need to see from a paper record is also difficult and prone to error. So although there is no statistically significant data to say that electronic health records improve outcome, there is much evidence to show that today, with the complexities of health care, electronic health records do improve the quality, safety and efficiency of care and provide physicians with an increased ability to conduct education and research that will hopefully contribute to positive outcomes. At the very least the electronic record contributes to continuity of care among all of an individual's providers. At the most, access to our records could be lifesaving if an emergency occurs and the details in the record are needed to make care decisions on the spot.
Lena M. Diethelm (lendie) Mon 12 Dec 11 16:16
Nancy, <jmcarlin>'s name is Jerry. Overall, my husband got and continues to get very good care. He is quite fortunate that his surgeon favors email (secure messaging in Kaiser lingo) communications. this has made it easy to reach him and unless he is not on duty, he replies quickly. It avoids the horrendous intermediated telephone attempts and telephone tag. My point, however, was to point out how putting "electronic" into the care equation doesn't necessarily make things better. Another thing I observed was that so much time was spent on the computer, that often the staff didn't share with each other when they should have.
Nancy Finn (nfinn8421) Mon 12 Dec 11 17:41
Lena I agree completely with you that digital communication does not automatically make things better. During this transition time when health care professionals are just getting their feet wet and experimenting with technology, there will be lot's of things that will not go smoothly. That is probably what you were experiencing. It will take time to get the kinks out of the process. and and all participants to the point where computerization makes everything more efficient. Health care has lagged behind all other industries in adopting communication technology. I am glad that your husband had an excellent surgeon who enabled you to experience open, secure communication via email. I agree with you that telephone tag is frustrating and very inefficient In the book I talk extensively about the benefits of email and email etiquette that doctors and patients should follow.
Joe Flower (bbear) Tue 13 Dec 11 08:26
One of the things that Lena's story points up is core to this discussion: The technologies themselves can be great enablers, but only enablers. The core of medicine and healthcare is built on direct relationship, direct observation, and human judgment. And how we build and use the technology is key to whether we enhance or degrade the experience. For instance, in Lena's tale: I am a Kaiser patient as well, and have experience with the Kaiser system in the primary care setting, and have discussed its use with my doctor, who is head of quality for the area. Lena mentioned the wheeled stands that they are on, rather than a tablet or laptop. My doc says that is to do two things: free up the doctor's hands, and specifically to allow the stand and keyboard to be placed in such a way that the doctor does not have to turn away from the patient while interacting with the computerand can turn the monitor so that the patient can easily see an X-ray or whatever without moving from the bed or examining table. Kaiser involved some 160 docs from throughout the system, as well as nurses and other clinicians, in a lengthy, repeated process of designing the system to work well in their environment. How people work with it still is being refined, it sounds like along with the problems of understaffing.
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