http://www.tedeytan.com/2008/01/09/617

I found your comments here especially interesting for anyone with an aging parent or for those newly diagnosed with a disabling condition, “One of the things I have noticed in the era of the EHR/PHR is that there is always someone else or others supporting patients that are not with them physically. This part isn’t new, but my ability to support that vital group (families and community) is.

What I do, then, is use the After Visit Summary to compose a letter to that person or people, with the patient helping me write it. The “letter” is printed out on the hard copy, and then permanently stored for viewing on the PHR of course.”

And this was especially important, “It doesn’t really take any extra time to do this. In fact, I’ll say that it takes the same or less time to do this if you factor in what I see a lot of, which is many clarifying questions at the end of the visit. This allows some time for those to come naturally, and be answered in writing.”

And I will try to be more proactive myself in my own healthcare vis-à-vis asking to see what my own medical record says and try not to think of it as self-centeredness but as my obligation to efficiency for all concerned.

Thank you again—see you in the blogosphere!

Hope

Well thank you for all of yours, I learned about what you care about in this process.

On that note, I want to requote myself from this presentation: “The parental (family, someone you care about deeply) relationship is one of the strongest human bonds there is. It is wasteful to ignore this energy. It is foolish to encumber it.” – Yet many hospitals and care systems try to do exactly this, by not involving families in care. You can see that presentation here: http://www.tedeytan.com/2008/06/26/1189

I bring that up because your care of a loved one with ALS is a powerful driver. If you believed that knowing what the doctor was writing/doing in the exam room would help them, would you hesitate to ask, “Can I see what you are writing?” Or put another way, if the doctor said, “No, you can’t see what I’m doing,” and you believed that this made a difference in care, would that stop you?

So, my answer to your first question is as you might expect: ask. If they say no, ask “why?”. Post their answer on your blog.

The answer to the second question loops back to the first one. If we know that the bond between loved ones is stronger than any bond between patient and physician, can a care provider/system afford not to engage in involving them? Wouldn’t it strengthen the patient-physician bond if the bond between loved ones is respected? Extend that to the patient themselves – we want the patient to feel confident in managing their health, to respect the healing bond within themselves (there is a lot of data about this), can we afford not to respect this by providing information needed to be in control. A factoid – patients get to choose whether to follow a doctor’s advice – doctors don’t get to make that choice for them.

An example from my practice – sure, I wrote a blog post about it here. Doesn’t take any extra time – take a look:

http://www.tedeytan.com/2008/01/09/617

On the comments about resources, my advice, to you Hope, as you go forward in this space and do wonderful and caring things for yourself, people important to you, and your community – think about what YOU and THEY need, rather than what the health system needs. You are allowed to prioritize yourself because this is your health. Instead of asking,”does this take up too much of my doctor’s time,” ask, “does this take up too much of MY time.”

The great thing about this approach is that doctors, nurses, and health systems really do want provide great care. It’s the thing that makes us smile, and we never get up in the morning hoping to keep people from achieving their life goals. If someone says, “Give me a break, I can’t do that (helpful thing)”. Ask back, “Can you help me achieve my life goals through optimal health? How?”

Post that answer here too…

It’s been a pleasure having this dialogue with you, Hope. Thanks for taking the plunge on going Web2.0 on the max on this interview, and for taking the time you have to help me make sure that what is in my head makes sense to the people it matters most to!

-Ted

You have asked me to summarize with one or two final questions.

Given that you encourage patients to ask their doctors during medical appointments if they can see what the doctor is writing, I would like to ask you the following:

Do you think that patients would be within their rights to indeed simply ask, “May I please what you have written?” as a matter of course and do you think their doing so would be better for everyone involved given that it might reveal to the doctor that the patient really does not understand what is happening and needs clarification?

Given the current state of affairs of heavy patient loads, do doctors really have the time to engage in the extended conversation with patients that this might lead to? What about the ones in the waiting room? Are medical students being taught to answer, “Yes, of course…” and how to field questions that come up? Is this a workable model in our current healthcare system and can you give us some actual cases in your own experience in which you wish a patient had asked to see what you had written and how that might have improved the care of that patient? Is this sort of participatory medicine possible only in plush, boutique medical practices? Do doctors around the country embrace these new paradigms or do they simply roll their eyes and say, “Give me a break. Kaiser has more resources than I do…”

Thank you again for all your time.

Hope

Would you (ask your doctor if you can see what they were doing)? Because if you did, the day that you are hoping to see will come sooner. I encourage it. The reality is, if they can’t or don’t want to show you what they are seeing in the moment, you’ll be able to see it any way, with a trip to the medical records office. Why pay $0.73 and wait 21 days?

Re: Phil Marshall – he wrote the post at healthdatarights.org – simply post a comment there and voila, you’ll be heard.

Your description of the intersection between you and ALS highlights the magic of this medium; I believe your readers will learn as much from you as from me. And hopefully more from you, from my perspective.

Regarding permanence of the record, my philosophy has been that “disk space is cheap,” (sometimes to the concern of my IT colleagues, but really, relative to a hospital admission, a life, it is.) I can’t quote retention policies here, but I hope this technology helps retention be very long….

This conversation has forked a few times, so I may have lost track of some of the loose ends, would you like to summarize 1-2 final questions/ideas that you’d like to see addressed? And by the way, I hope your readers will also comment as well.

And I do want to share that once upon a time, I was running around desperately trying to find x-ray films in the annex of a very large community hospital for doctors. Most behaved professionally, some didn’t, and fortunately in those cases I learned how I wanted to be when my time came. As it is said, a person who is (consistently) not nice to the server in a restaurant is probably not a nice person,

Ted

• Because I love someone with ALS, I want to learn as much as I can about it. But the leading journal on the subject Amyotrophic Lateral Sclerosis http://www.tandf.co.uk/journals/online/1466-0822.asp costs more than $1,000 a year for even a personal subscription. That fact has led me to admire ever more the work on Open Access that people like Peter Suber http://www.earlham.edu/~peters/fos/fosblog.html and Heather Joseph http://www.arl.org/sparc/about/staff/joseph.shtml do to try to render the results of medical research as widely available as possible.

• Because I love someone with ALS I find hugely admire Jamie and Ben Heywood for their work in trying to convince an often sluggish scientific establishment to fast track research and to enable those with dire conditions to gain access to their own medical data so as increase their chances of survival and better their quality of life. When I first learned about my friend’s diagnosis of ALS I spent a lot of time in the ALS community of PatientsLikeMe and was daily moved by the courage and solidarity of the People With ALS (PALS) and their caregivers and was given much practical advice about such things as remodeling bathrooms on accessibility lines and marveled at the sophistication of the knowledge exchanged and by the compelling, often heartbreakingly eloquent accounts of the illness experience of those with neurodegenerative conditions. I think every single student in the health sciences should be required to view the film So Much So Fast http://www.westcityfilms.com/smsf.html because it shows what it is like to be stricken with a devastating illness, the power and limitations of assistive technologies and the stresses and strains of family caregivers—and Stephen Heywood was a fine, courageous young man.

• Because I love someone with ALS, I am fascinated by how such online patient communities as PatientsLikeMe are able to leverage the power of crowdsourcing and masses of user-generated data to lead to new forms of Participatory Medicine such as the lithium in ALS study http://www.patientslikeme.com/als_lithium and how orthodox neurology is reacting to patient initiated and led clinical trials.

• Because I love someone with ALS, I am fascinated by innovative uses of social media in its study. I had the privilege of interviewing Dr. Richard Bedlack, for instance, about his use of Twitter to acquire data from PALS about their use of off-label treatments: http://www.nextgenerationscience.com/science-resources/alsuntangled-interview-with-richard-bedlack/

• Because I love someone with ALS, I admire people who work in the field of rare disorders like Sharon Terry of the Genetic Alliance http://www.geneticalliance.org/ws_display.asp?filter=bio.terry who does remarkable things on the advocacy and legislative fronts.

• Because I love someone with ALS, I am grateful to have the opportunity to work on ScanGrants http://www.scangrants.com/ because I want to connect researchers and funders. The very first category we created on ScanGrants was ALS.

• Because I love someone with ALS, I admire people like you, e-patient Dave and Danny Sands for tirelessly, but nonconfrontationally trying to render medicine safer, more efficient and more responsive to patients vis-à-vis their increasing desire for more information from and joint decision-making with their providers.

• Because I love someone with ALS, I admire the leaders of the Open Science movement like Jean-Claude Bradley and Cameron Neylon for their constant efforts to render the processes of science and of scientific communication ever more efficient.

Now, on to your other comments. It is indeed depressing that Britain’s Chancellor of the Exchequer Alistair Darling said, “…the NHS had a quite expensive IT system that, frankly, isn’t essential to the front line. It’s something I think we don’t need to go ahead with just now.” It makes me cringe as I recall my days as a medical records as recently as 2004 sorting by hand through piles of file folders clerk looking for a patient’s chart while some poor doctor and the patient herself waited and waited for the info they needed to alleviate suffering. What is front line if that isn’t? Clearly, there is a disconnect sometimes between policymakers and reality.

Your comment here, “…usually a new medical record is started” makes an important point. Will the coming era of an EHR mean that a patient’s medical data will not be destroyed (that is sometimes now the case, right, given that providers are not obligated to maintain records forever but only for stipulated numbers of years?). Do you use cases such as DES http://www.cancer.gov/cancertopics/persons-exposed-to-des when making the case for a more permanent EHR?

Could you please tell us which post mentions Phil Marshall and provide a link? Sorry to be dense.

I found your post, “Now Reading: Patients want their radiology test results” http://www.tedeytan.com/2009/11/05/4069#comments really fascinating and found the comment by a doctor on it, “I run into this all the time with endoscopic biopsy reports. Parents review them, search terms and worry about things that don’t exist. Then I have to spend valuable time talkin’ ‘em off the ledge…” revealing in that he regards time too valuable to be spent on interacting with patients.

I appreciate your gentle rebukes of my seeming disparagement of some in the health information management profession. Your comments here are well taken, “…what may seem like a focus on HIPAA is really a focus on maintaining a comfortable and private health care experience, and an accurate one too, by the way” and “I haven’t met a doctor, nurse, or CIO who wakes up in the morning hoping to deliver bad health care. (have you?).”

I found your comments in the post, “Now Reading: Overtreated, by Shannon Brownlee” http://www.tedeytan.com/2008/05/21/982 quite fascinating because I attended a review for the general public by a respected internist here in my hometown in Oregon of that same book and was quite surprised that no mention at all was made of the impact of the Internet or healthcare IT at all—nothing about the e-Patient movement, nothing about EMRs.

I liked your comment here, “A system that is willing to be transparent with its patients is probably more willing and able to improve itself over time.” I really tempted the next time I go to the doctor for a routine appointment to just lean forward as he writes in my chart and ask gently, “May I look at that too, please?” Is that day coming?

Hope

On your last comments, one of my other huge interests is diversity, and in that world, I am always reminded, there is not one doctor, not one nurse, not one kind of HIM professional.

What there is, though, is a commitment in all of them to perform well for patients. So, what may seem like a focus on HIPAA is really a focus on maintaining a comfortable and private health care experience, and an accurate one too, by the way.

I always try and tap into that commitment and ask, “why?” and more specifically, “why is this important for patients?” And 99.99% of the time, the answer makes sense and is important. The key thing is to ask “for patients” in that questions.

Circling back to the CIOs and the providers, I think they’re on board – that they want to perform for patients, or as I said in this blog post –

“If I have learned anything in my journey over the past 8 months, it is that all physicians and health care workers are idealists (my quote “everyone that goes into healthcare is exceptional; they have to be for a job this challenging), and crave a health care system that supports their energy and creativity.”

Put another way, I haven’t met a doctor, nurse, or CIO who wakes up in the morning hoping to deliver bad health care. (have you?)

The best leaders will bring this sensibility to these organizations and “make it easy” for people to do this using technology. And, it is happening….

Best,

Ted

I really appreciate the background – not pompous at all, it demonstrates the richness of this environment, where the interviewer has as interesting experience as the interviewee.

Tell me more about ALS, where does that fit in to your passion?

You asked about Britain. Some interesting news came out, I think it’s on the disappointing side, see what you think.

You asked about my posts about the harm from not sharing test results. Those are here.

You asked about what Kaiser Permanente is doing with new members who enter the care system. That’s a challenging proposition for most health systems today – usually a new medical record is started (securely and electronically). This is being worked on, of course.

The questions about academia, and fee for service hospitals are a bit out of my reach for an answer. And that’s a good sign – it means you’ve come to a good place to dig deeper with folks in the areas where you have questions.

The person I’d refer you to for the questions about HIPAA and OCR would be Phil Marshall, MD. Feel fee to go to the blog post I referred you to and post a comment/question there.

Best,

Ted

At first, I was rather disappointed that you didn’t go for my idea of coining the term, Participatory Medical Record. One does like the idea of being credited with introducing a new term into the language.

But I like your shrewd tactic of simply creating a new reality. To wit, why bother with new terms and patiently creating a new climate of opinion in favor of patient-friendly EHRs when we can simply present the healthcare information management sector with a fait accompli? “Hello, HIM industry. Henceforth, patients will be able to view and download any of their own health data they want from your system. That’s all—thank you!”

I am being facetious here, but aren’t the mindsets of the various players totally different? HIM is all about providers and HIPAA and secure systems. Isn’t patient empowerment a non-starter in certain circles? Or is there is a new generation of healthcare information managers who will work closely with patient-safety-minded CIOs to create the world that you and e-patient Dave and those in the Society for Participatory Medicine http://participatorymedicine.org/ envision?

And will these visionary hospital and health network CIOs be able to convince all their providers to come on board? What would the providers be afraid of? Is there any evidence of dire legal consequences for hospitals or small practices (are there any that have?) that have indeed provided patient-friendly EHRs to consumers? Or will there instead start to be the fear of what happens when smart lawyers start to say to juries, “Now, if my client had had full and unfettered access to her own health data she would have not taken the drug that interacted so disastrously…” How do you make the patient safety argument to healthcare administrators when arguing for patient-friendly EHRs (and I am beginning to think that we do a need a special term, after all, so as to distinguish from the EHR of the status quo from the EHR of the future)?

On the question of innovation, the technology lesson seems to be getting through, but is the patient empowerment likewise so? I have not seen, for example, large numbers of healthcare administrators from mid-sized hospitals at conferences such as Medicine 2.0 and e-Patient Connections Conference 2009. How are you reaching those who are not yet familiar with the tenets of Participatory Medicine?

And, oh, aren’t you a tease here, “I can offer you your next interviewee who can tell you all about that!” And who would that be, pray? I am always looking for brilliant people to interview. So much fun!

Hope