I can’t help but think that as time passes we’ll forget about how much medicine has changed with the introduction of the Internet. We’re witnessing a transition that hasn’t been seen in generations. We live with the end result but the memory of how we got here is fading quickly. Like any kind of cultural shift, once we’ve arrived it’s hard to remember what it was like along the way.
How did patients think before the information revolution? And how did it go down when patients began to search? How specifically did information clash with the old model of doctor and patient and how did we deal with it? There are stories here that need to be told. I think the real stories are in the small details of what went down between doctors and patients. But as early adopters, most of us spend our time looking forward, not back.
I’m trying to record what I remember about the past 10-15 years. How it went down. What did I see and how did I feel? But as a provider I only have half of the story.
It isn’t a formal project but I think it’s important. I’m having a hard time corralling the concept, packaging it. If you have ideas about this let me know.
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I have worked in the NHS in the UK for over 15 years – I started as a Receptionist and worked my way up to a Manager. I worked in GP Surgeries, and also worked with the out of hours Doctors in the local A&E Departments of the local hospital.
I have started a blog of the up and downs working in the NHS – the good the bad and the ugly. I share my stories and experiences as well as some training programmes that I had with staff. I love working for the Healthcare sector and am a firm believer is good customer care. I hope you enjoy my blog.
For me personally as a patient, bouncing from one specialist to another trying to get a proper Dx for my back issues; different diagnoses, repetitious paperwork, no illness tracking methodologies, different offices on different parts of town with different operating schedules, waiting rooms, and like Cool Hand Luke: “What we have here is a failure to communicate”. So much so, it leads to bitterness on the part of the patient, something that presently unifies all e-Patients. For me to survive, I had to establish my own EHR, before this became an accepted term, my own illness tracking methodologies, and a personal friend of Dr. Google. As a scientist, some of this was second nature, but the fact that I was completely on my own with this, I find shocking in the 21st century. Thereafter, I made it my mission, as a med school faculty member, to begin implementing changes in the way Docs are trained. I can’t change the entire healthcare industry, of course. But we have to start somewhere to bring American healthcare into the 21st century.
How marvelous you even asked this question!
There’s a story in there, Bob. Amazed that I didn’t know that part of your history.
Bryan- unfortunately, for me the story is far from over, as with so many others suffering from a chronic illness. Would love to see you get lots of feedback on this post, because it is a critical one. -Bob
@westr
Oh, Dr V, This is so easy.
I started advocating for myself and then realized that it was my research medicinal scientist dad (who spent way too much time thanking the medical profession & apologizing for his “annoying” attorney daughter) that needed an advocate.
Since dad’s death I appreciate that angry attorneys must take a deep breath. The hospital advocates work for the hospital. The real need is for advocates to be intermediaries with many skill sets to help the family.
Family members must be given precious time with their loved ones and whatever involvement with the medical profession they want (or don’t want). Some family members want to argue with nursing home paraprofessionals about whether elderly parents are being properly turned to prevent bedsores; some don’t. Some family members want to discuss changes in meds; some don’t. The focus must be on whatever makes the family strong enough to enjoy life with the sick family member. It is that simple.
There is a real need for patient advocates that work with family members at the specific directions (no more, no less) so that family members can can focus their energies on enjoying precious time with loved ones.
We are working on a project from the other end. We’re working to collect stories of “what worked to help your child.” With today’s rocketing diagnosis-fest, it seems that people are relying more on studies and the words of experts than on anecdotal help from others on what works with a particular child, by temperment, how many kids in the family, culture, what they eat, etc. One of the things that I have discovered is that collections of information are powerful and can be leveraged on the internet. Good luck with your project!
As a patient and doctor it is clear that there is a great difficulty for most people negotiating the new interactions evolving with the evolution of social media on the back of an expanding and speedier internet.
As a patient, it amazes me that GP – Hospital specialist interactions are mostly by mail and telephone. Email and texting is a rarity. That my scans and other investigation results are not easily available to anyone looking after me reflects how much more work needs to be done in health care IM&T systems.
As a General Practitioner/Family Physician, it troubles me that it remains so difficult to communicate with hospital colleagues about mutual (troublesome/complex) patients. When hospital consultants do give me mobile number, it is not exploited. However, when a situation for prompt care is needed, text message +/- telephone with voicemail has cut through red tape. Using mobile messaging with community nursing team has also improved communication and speeded up management decisions with less impact on my clinics.
We have recently installed DocMan, a document management system. It includes rudimentary OCR technology (Intellisense) but as this is mainly business oriented, it is proving an uphill struggle for receptionists to accurately scan the mail into our document server. And when the doctors do get the letters on their workstations there is too much delay loading up patient clinical codes to make the experience enjoyable. E.g. 87 letters coded yesterday by colleague took over 2.5 hours. For the doctor, it would have been quicker to do that manually! I will stop now, and look forward to the discussion as this grows.
Medicine truly has come a long way in terms of how diagnoses are conducted, how patients locate and communicate with doctors, how payments are made, etc. Our society seems to be so forward-thinking that we can’t, or don’t seem to have the time to, recall all of the great things that have been achieved in healthcare. The movement towards EMRs marks yet another milestone that will have its bumps for many, but in the coming years I think those who implemented them will look back and appreciate that technological feat.
As a patient and mom-to-little-patients, I’ve definitely found the internet has changed so much about my thinking when it comes to research and doctors’ appointments.
When I had PIH with my first pregnancy and Grace was a premie and SGA, I used what I could find on the internet to reassure me. What I found made me feel so much better about my brand-new firstborn, especially when the neonatologist just didn’t have much spare time during rounds (understandably…not complaining) to reassure a very nervous new mom. So what I could find then was very helpful, and assisted me in whittling my million questions down to the critical few.
Back when I got my glaucoma diagnosis–in the dinosaur days of the “worldwide web”–I tried, but couldn’t find much about the disease online. That’s probably good, since I had to talk to my opthalmologist and a friend who was finishing his residency, ask all my questions that way, and not scare the bejesus out of myself reading all the stories I find out there now.
When I got my retinitis pigmentosa diagnosis earlier this year, though, I burst into tears after googling that disease and reading about people no longer able to drive 3 months post-diagnosis. So that just scared me, without really benefiting me in any way. I think that’s a downfall of information on the web; if it’s not ultra-general, it’s often from folks who have had really bad experiences and thus are motivated to post.
Though I do research my kids’ conditions and symptoms, I think I’m kind of a closet researcher; I never want to tell the doc that I searched and read all over the web, for fear of looking like I think I’m an armchair physician and as though I’m trying to second-guess his/her expertise. I think like most parents, I just want to know all I can…not wanting to say, “I saw such-and-such on the internet last night” does complicate things, though. Sometimes, I walk away from an appointment wondering how I could have somehow asked about something I read without looking like I doubted what the physician said. My parents completely relied on the mom-grapevine and the doctor, whether that was right or wrong. Now, I feel like I need to find a balance between doing my due diligence and giving full weight and respect to what our physicians tell us.
–Don’t know if that is at all the info you’re looking for, but wanted to share! I could go on and on with the examples, but I think I’ve taken up enough space already…apologies for the comment length, and thanks for reading!
As a stroke survivor I don’t think I could have survived 20 years ago with out the internet and the ability to connect to other survivors who have all the needed information. Doctors in this case are completely befuddled and out-of-date. The world is changing too fast for the current static information delivery dispensation, which takes 20-30 years to be disseminated. For settled diseases this may be ok.