Over the past year or so as I have been attempting to educate myself about the subjects of Health 2.0, Medicine 2.0, the e-Patient movement and Participatory Medicine I have been privileged to be guided in my somewhat bumbling but earnest efforts by some of the best thinkers on these topics (e.g., Dr. Daniel Sands of Cisco’s Internet Business Solutions Group and the personification of the e-patient movement, e-Patient Dave).
When I asked both of those thought leaders (I know some people hate that term regarding it as pretentious, but it works in this context given the key role people like Dr. Sands and e-Patient Dave play in educating a huge range of people in the healthcare sector about these important issues) who else is one of the leaders in the field of digital health and whom I should try to talk to in order to better understand these matters, they immediately mentioned Ted Eytan, MD MS MPH.
I thereupon emailed Dr. Eytan and he very graciously offered to answer questions I posed to him here by commenting here. Thus, this post is an experiment in Participatory Blogging in that I am asking my questions of Dr. Eytan and we will all see what he says.
I started by goggling Dr. Eytan (I was already familiar with him via his Twitter feed and was quite intrigued by the content of e-Patient Dave’s post, “From Ted Eytan’s blog: “Now Reading: Patients Actually Want Their Entire Medical Record”.
Therefore, I’d like to start off this interview by discussing the relationship between electronic medical record systems and Participatory Medicine.
But first, a bit of background. We all know that Kaiser Permanente has been a leader in the implementation of electronic medical record systems and that it has been generous in sharing the wisdom it has gained in the process.
I would like to start off by asking you, Ted, what position you now hold at the Permanente Federation and when you relocated from Seattle to Washington, DC and how your activities have changed because of that move. Are you working more intensely in the area of national legislation related to healthcare IT, for example? For instance, given your interest in patient access to their entire medical record (and am I correct in statement and would that include absolutely everything in it, including physician notes?) is that legally possible under Health Insurance Portability and Accountability Act (HIPAA) as it now stands or is some legislative change required? Is there anywhere in the US where patients can see via the Web absolutely everything in their record or can they see only large portions of it and transfer much of that to personal health records? When I spoke to Dr. Sands he mentioned several innovative programs. But I am still not clear about the specifics as to what the current state of affairs is vis-à-vis what can be accessed by patients and where such programs exist. And what would such an EMR be called? A participatory EMR? Is there a specific term we should be using?
And on the matter of the promise of Participatory Medicine, would it even be fully realizable without such a participatory EMR? And one of the things that strikes me, as someone who started out in healthcare as a medical records clerk, is that when I attend conferences such as Health 2.0 and the e-Patient Connections Conference 2009
there does not seem to be much representation by the gatekeeping groups who actually make the decisions when it comes to health information management matters such as the American Medical Informatics Association (with the notable exception of Dr. Sands, who serves on its board), the American Health Information Management Association,
and the Healthcare Information and Management Systems Society.
Are many of these groups even aware of the Participatory Medicine movement? Are they ready for it technologically and philosophically?
Hi Hope,
This is why I already like this approach – I did not know of your background as a medical records clerk. We share maybe a little heritage in this area, as I was once a file-room clerk in a radiology department (back when X-ray was on film….).
Given your interest in the health information management area, I agree with you, that professionals in this area should be involved in health information technology, because HIT is more about “I” than “T”, right?
I am not an expert on HIPAA; I think, though that it’s important to speak of access to the medical record vs. access to things like lab results. In the latter area, you might be interested in this proposed change. However, this regulation does not prevent doctors from sharing medical records from patients. Patients are allowed to see their medical records – it took me a while to figure out that this is not only okay (!) but required by law in most places. Some states, like California, have laws which I consider artifacts of fear, and restrict access to parts of the medical record over the Web. Today’s patients, I think, don’t see the benefit of such restrictions. Just ask Dave!
You also asked about a participatory EMR/EHR. I don’t really know that something special needs to be created. Just a simple requirement – imagine that if patients can see/access everything contained in their EHR, wouldn’t participation by definition follow? I think that’s what’s happening in the multiple health systems that are making this possible, including at Kaiser Permanente.
I think we should have this conversation in small bits, so feel free to pose additional questions based on the above, and we’ll see where the conversation goes.
Best,
Ted
Hi, Ted. Oh my gosh–that is why I find this approach exhausting and unsettling! I just went to get a few minutes of sleep and have come back to find that you have already answered my questions very interestingly.
I used to sort radiology reports–back when there were written reports on the film you used to deal with…
I am going to mull over your responses and write another post. In the meantime, can we assume that using the term “participatory EMR/HER” is okay? Is it a new term that you and I have created as of this morning? Wonder if it will catch on. Seems to me it is a concept that needs a name if the idea is to become reality. Hard to chant, “We want a mutually viewable, collaboratively-curated electronic medical record now!”
And then there is the fact that you seem to be using the terms EMR/EHR interchangeably, whereas I though they were distinct.
I also had never heard of HealthDataRights.org and had not heard of Jamie Heywood’s Declaration of Health Data Rights petition–pretty impressive group of co-signers: http://www.healthdatarights.org/endorsements. Do you worry, though, that so many of them have some kind of financial interest in Health 2.0 companies? There does not seem to be much representation by those in academia and in the disease advocacy community (say by members of the National Organization for Rare Disorders, the Genetic Alliance). That worries me a bit. Is that simply because those in industry can act more swiftly when it comes to taking public stands or are there reasons those other groups are holding off?
As to your reference to your post here http://www.tedeytan.com/2009/01/21/2754 do you agree that it immoral (I believe that that is the word he uses) that is actually illegal to provide patients with some of their own data?
I will read carefully all you have said. Thank you for your time–I know you are a busy guy.
Hope
Hi Hope,
I’m interested in your “exhausting/unsettling” feeling. Tell me more about that. Is blogging new to you? How did you decide to use this format to communicate?
Actually with regard to “participatory EHR,” I am not a big fan of creating new terms, so I wouldn’t do it.
Why don’t we just say an EHR (“Electronic Health Record”) is one that the patient can access and use to improve their health. One that a patient cannot leverage to improve their health…well…what is that? The Meaningful Use criteria laid out by the US Government is going to define an EHR along the lines that we are talking about, I believe.
You asked about EMR/EHR definitions, I use the ones developed by the now-defunct NAHIT (and in writing this comment, I went to go look for them and *poof* they are gone. Sometimes it’s important to save those PDF’s! Fortunately, they are now here: http://healthit.hhs.gov/portal/server.pt/gateway/PTARGS_0_10741_848133_0_0_18/10_2_hit_terms.pdf )
You asked about healthdatarights.org and financial interests/endorsements. Well, as you can see on my blog, I don’t endorse any third party products or services, and I don’t accept honoraria or support from any device or pharmaceutical manufacturers. That doesn’t mean, though, that I wouldn’t endorse a good idea that helps the patient, the customer, improve their health. Instead of asking, “why isn’t academia represented in HealthDataRights,” I might ask, “What is academia doing to support concepts of patient empowerment and transparency?” They don’t all have to be part of the same organization after all. We know the outcome of interest, don’t we…
About California, I think every patient/citizen is entitled to judge how something makes them feel, of course. I think it’s probably harmful to keep patients from their health information, and as you’ve seen on my blog relatively recently, there are now studies to support this. The question I would ask instead is, “If California eliminated that regulation today, what would be the impact?”
What do you think?
Best,
Ted
Hi, Ted. Thank you for your latest comments. I am learning a lot about the nomenclature of health information management and who is who in the health data rights movement.
And we are also now venturing into the question of the matter of what medium one chooses for communication and self-education. In my case, it is blogging.
You asked about my “exhausting/unsettling” feeling. Well, that comes from the fact that blogging is a sideline. I have a day job (which I do like very much, as I get to spend much of the day working on ScanGrants http://www.scangrants.com/, which I think is a genuine contribution to the health sciences) and so have to delay working on this blog until I get home. In this case of your questions, I really wanted to get to them the very minute I saw them. But there was the little matter of getting properly dressed and out the door.
I have been blogging on search and health-related matters for about a year and a half. Thus, blogging is not really new to me. But being able to engage notable people such as you in actual dialogue is.
Here are reasons I blog:
• I love or have loved lovable, admirable people who have been cruelly afflicted with devastating diseases. Blogging enables me to network in the health sciences and so educate myself on such issues as Open Science, Open Access, Participatory Medicine, the e-Patient movement and health IT issues that I am able to do the following:
o Learn who the thought leaders, entrepreneurs and technologists are in these realms so that I can profile them in various venues and thereby introduce them and their work to people who may not have heard of either.
o Learn from such leaders so that I can better elucidate matters for a general audience so that more people will learn as I learn about what is possible and what needs to change and who is heroic and brilliant.
o Obtain press passes so I can gain free admittance to conferences where such matters are discussed. Without the press passes, I probably would not have been able conferences such as e-Patient Connections Conference 2009 http://epatient2009.com/ and the Health 2.0 Conferences http://www.health2con.com/
o Get important, smart, committed game-changing people like you to talk to me. That is not flattery—that is a fact. And by talking to people like you I learn things that enable me to do things like help organize a conference in the Seattle area under the auspices of Science Commons on February 20, 2010 (details to come—we are still working on the details) featuring brilliant people like John Wilbanks http://sciencecommons.org/about/whoweare/wilbanks/
• I blog because I want to do what I can to create a world without amyotrophic lateral sclerosis and a world in which people with such diseases can get medical care in the most efficient, cost-effective, humane manner possible.
Now, having somewhat pompously discussed why I blog, I will address your other comments.
Thank you so much for the link to the government report. I was going to ask you more about the differences between EMRs and EHRs and whether the EMR is eventually going to go bye-bye given the rise of the e-patient and the concomitant demand by such empowered consumers for access to their own medical data. This passage answers that question, “With the passage of time, electronic records that are not capable of exchanging information interoperably will lose their relevance. Thus, the term EMR is on a course toward eventual retirement, leaving EHR as the sole term referring to records of health-related information in electronic form that can be exchanged by health care organizations.”
And your point is a fascinating one that we need not create a new term, Participatory Health Record but just act on the assumption that the EHR will be fully accessible to patients.
Well, that appears to be that! But are hospitals really there yet? What does Kaiser do about a patient that enters its system with records from, say, various non-Kaiser-affiliated clinics and hospitals that also have no relations to one another? And do you buy the argument that community hospitals are going to decide to pay the costs for EHRs for small practices as a way of expanding their provider networks? Are the technology and the industry there yet? Will there really be a nationwide, interoperable EHR? Where is Britain on that project? It didn’t start out well there. If I were an investor and wanted to make money on healthcare IT and the EHR, where would I want to put my money?
I agree with you about not seeing anything wrong with endorsing good ideas from industry if they help patients. I very much admire the CEO of Private Access https://www.privateaccess.info/ Robert Shelton, for instance.
And I will throw your question right back at you, “What is academia doing to support concepts of patient empowerment and transparency?” And add this one, “Does it really matter if it does?” Can you name some academics that matter on these matters?
And on a related matter, who really changes things legislatively on these matters? Google got into hot water on this score recently, for instance, http://www.redorbit.com/news/entertainment/1678580/consumer_watchdog_us_senate_records_reveal_google_inc_lobbying_campaign/index.html
Could you please provide us with a link to a specific post of yours that addresses your comment here, “I think it’s probably harmful to keep patients from their health information, and as you’ve seen on my blog relatively recently, there are now studies to support this.”
And on this question, “If California eliminated that regulation today, what would be the impact?” I would think that it would open up some nice space for some clever Health 2.0 startups to devise ways to capitalize on that change. Can you think of some and how they would do so and how consumers would benefit?
Hi, Ted. I have read your answers and would like to ask you the following questions.
• Can we indeed now use the term “Participatory Electronic Medical Record/Participatory Electronic Health Record (PMR/PHR)?” Are those two terms likely to catch on? As I mentioned above, it seems to me that unless there is a distinct term for these concepts discussion of them will continue to be too arcane for consumers to grasp, thereby impeding popular pressure for Web-accessible personal health data. Are you and other leaders of the Participatory Medicine movement going to use those terms henceforth?
• Could you comment on the distinction that HIMSS makes between EMRs and EHRs http://www.himssanalytics.org/docs/WP_EMR_EHR.pdf
and do you think that hospitals and heretofore way hospital CEOs will begin to regard the idea of offering a Participatory Electronic Medical Record as not a nuisance and a HIPAA-related nightmare but as a way of obtaining a competitive advantage over their rivals and even as a matter of survival in an age of increasingly empowered patients? Have you found that to be the case at Kaiser?
• Did much actually happen at the meeting you mention at this link
http://healthdatarights.blogspot.com/2009/10/action-change-rules-and-get-your-labs_15.html
And again, do you think that the Office of Civil Rights and the Centers for Medicare and Medicaid Services would have been swayed by a letter in which most of the signers with the sole exception of E-Patient Dave had some connection to Health 2.0 or Health IT companies? Where was the grassroots consumer support? What happened at that meeting?
Hope
Hi Hope,
On the questions above -
I reviewed the HIMSS Analytics paper, and it makes sense to me. It’s on the same wavelength as the NAHIT definitions I linked to previously.
I’m going to stick with not creating a new name for things – I know how it’s attractive to do, to differentiate things, but I think it’s better to make the original thing what we want it to be!
What I think is going to happen is that health care organizations are going to find that the true nuisance is:
- poor quality of care
- patient disempowerment
- patient safety risk
…which comes from not serving your customer, which comes from not involving them in their care. The competition is not other hospitals, it’s really bad health. And bad health is the real nightmare for any patient and their family!
If you look at the landscape of organizations that are doing this, not just Kaiser Permanente, but its world-class health system peers, what they have in common is this ideal, to be the best for their patients and communities, and the ability to innovate to make it happen.
If you extend that to all physicians, hospitals, and health systems, I think the same is true, all of them want to be the best for their patients and communities, and as they learn that they can do this by involving patients and their families more, they will, by seeing the innovation happening all around them, and learning from it, and co-innovating as well.
How does that sound?
Regarding the OCR/CMS letter, I can offer you your next interviewee who can tell you all about that!
Best,
Ted
Hi, Ted. Thanks again for providing those NAHIT definitions.
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
Hi Hope,
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
Hi 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
Hi, Ted. On this question, “Tell me more about ALS, where does that fit in to your passion?” I know, love and respect someone with ALS and that has led me care ever more about issues that you and I care about in the following ways:
• 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
Hi 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
Hi, Ted. Thank you much for taking so much time to answer my many questions.
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
[...] Article Hope Leman, Significant Science, 7 December 2009 [...]
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Hi 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
Hi, Ted. I just want to thank you for all your courtesy in fielding my many questions. I definitely do recommend that those interested in personal health records and in Participatory Medicine read your blog post, “Patient AND Family Centered, using the PHR to connect with everyone”
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