The Sweet Spot

I have heard a lot of talk about ownership of medical information.  Bloggers like e-Patient Dave, and Robin are strong advocates for patient ownership of their information.  To be truthful, I get nervous when I hear people saying they own something I have in my possession (and I\’ve blogged about this).  The charts in my office are mine, right?  How can I create something and have it not be mine?
I carried this unease with me into the exam room recently.  Thinking about the ownership of medical information, I opened a patient chart.  The vital signs were already in, and I started in on the HPI (the patient\’s story as to why they are there).  I do this by asking questions: When did it start?  How long did it last?  What did it feel like?  What did you take?  Did you have other symptoms with this?  How bad was it?  Have you ever had this before?

Hmmm…. Whose information is this?

Then I went on to the review of systems.  We have the patients circle symptoms on a laminated sheet and I discuss what they circled.

\”You have some chest pain?\”

\”Well, it was a sharp pain that happened when I coughed.  Is that bad?  Could it be my heart?\”

We then go into a discussion about chest pain and what to look for.

I put down the information the patient has given me and think a little more.  The patient\’s information?

Then I get frustrated.  The past medical history hasn\’t been updated recently, she\’s been in the hospital and most of the information about this is not in the chart.  The medication list is not accurate.  The information about her family, lifestyle, and habits are incomplete and I don\’t know when they were last updated.  I sigh, then try to fill in the gaps as best as I can by asking her questions without betraying my lack of confidence in our record.

We have a meeting of our IT team after this, and I am thinking about this encounter.  We are about to roll out a patient portal where patients will be able to log onto our website securely and fill out patient demographics, request refills, and get appointments.

\”What information in the record would the patient be best to be in charge of?\” I ask.  By being \”in charge\” I mean that the patients would have actual control of this information and we would read it.  I tell them about my experience and frustrations and we make the following list:

  • Marital Status
  • # Children
  • Job/School info
  • Home DM monitoring, weight, BP
  • Address, phone, e-mail address
  • Family history

Then I ask, \”What information in the record could the patient contribute directly to?\”  By this I mean that they would see the information as it is in there and be able to suggest changes or additions, but would not be able to actually change themselves.  Here\’s what we came up with:

  • Smoking, alcohol
  • Medication List
  • History of visits to other medical providers, consultant names, etc.
  • Review of systems prior to visit
  • Surgical history

We want to be able to assemble this information so that it is in a format that is readable to us and fits our needs, but the patient would have the ability to take this data information and perhaps download it to organize as they wish.

\”So what information should they have access to?\” I ask, referring to information they can see, download, and organize as they wish, but not add or subtract to.  Here is that list:

  • Upcoming tests needed (Colonoscopy, etc)
  • Immunizations
  • Lab results
  • Visit schedule – past and present
  • Previous vital signs
  • Recommended schedule based on their diseases
  • Problem list?

Finally, we discuss what is our own information that the patient only has access to if they request it.  This is information that either will give them too much information (our thought process and remote concerns) or even things that we don\’t want them to see (suspicions about truthfulness or worse).  Here is this list:

  • Perhaps the problem list – if it contains things like anxiety, suspected abuse, or private things the patient has told us.
  • The HPI often has information that is potentially sensitive.  People have to feel free to tell us things, and having that information be back in the face of the patient on the Internet (albeit a secure site) goes a bit too far.  Who knows if a family member can access it?  What about teens?  It\’s just too complicated.
  • Part of the assessment and plan is often conjecture and reminders to ourselves to pay attention to things in the future.  If a person has weight loss, we may keep cancer in the back of our minds.  If a person is asking repeatedly for narcotics, we may write down suspicions that  bear watching in the future.  We have to have a place where we can put things down and know they are for our own eyes only.

The last list is the shortest.  Yet the current state of things is that the entire chart falls into the last category.  This not only leaves the patient in the dark, it makes it so we have to do a whole lot of unnecessary work that the patient would do much better at (and without costing us a dime).

I think this is the sweet spot.  This is the way the medical record should be in the future.  It should be a shared venture – not just between PCP and patient, but also including other providers.  For care to truly move forward we have to dream about what it could be.  Our office now has this as the vision for where we want to head.  I know my patients will be thrilled, and I am pretty sure I\’ll have a lot less frustration in the exam room.

43 thoughts on “The Sweet Spot”

  1. Rob – I like your list of who has access to what information…
    And I agree that “ownership” is not the right concept. Collaboration is / should be the right approach.

    But your entire review describes “we” and “the patient” — two distinct stakeholders — the patient was not a part of the “we” — meaning your development of your list was not a collaborative effort. Why not make the determination of which information is accessible by whom a collaborative effort, too? Have you asked a patient what he/she thinks of your list? Did any patients participate in your assessment?

    (Yes — granted — you have asked in this blog — but that’s not the same as making patients a part of your development team.)

    I am continually amazed at the ‘them’ vs ‘us’ nature of these conversations about access to medical records. While I think your overview of the components and who should have access is probably quite good, I see your development of the list as being one-sided.

    (by the way — I’m not picking on you — I tell this to all the providers and HC professionals who ask the same sorts of questions.)

  2. Rob – I like your list of who has access to what information…
    And I agree that “ownership” is not the right concept. Collaboration is / should be the right approach.

    But your entire review describes “we” and “the patient” — two distinct stakeholders — the patient was not a part of the “we” — meaning your development of your list was not a collaborative effort. Why not make the determination of which information is accessible by whom a collaborative effort, too? Have you asked a patient what he/she thinks of your list? Did any patients participate in your assessment?

    (Yes — granted — you have asked in this blog — but that’s not the same as making patients a part of your development team.)

    I am continually amazed at the ‘them’ vs ‘us’ nature of these conversations about access to medical records. While I think your overview of the components and who should have access is probably quite good, I see your development of the list as being one-sided.

    (by the way — I’m not picking on you — I tell this to all the providers and HC professionals who ask the same sorts of questions.)

  3. Well said Rob: “It should be a shared venture – not just between PCP and patient, but also including other providers. ”
    Thoughtful and reflective insights into the co-creation of an essential database with multiple “owners”, and uses. All with the duty of care. You have moved the patient’s interest up the food chain.

    Bravo!

  4. Well said Rob: “It should be a shared venture – not just between PCP and patient, but also including other providers. ”
    Thoughtful and reflective insights into the co-creation of an essential database with multiple “owners”, and uses. All with the duty of care. You have moved the patient’s interest up the food chain.

    Bravo!

  5. Yes, yes, yes.
    One of the key findings / recommendations in the e-patient white paper is “The best way to improve medicine is to make it more collaborative.” The text goes on to say we shouldn’t turn the putative “doctor-centric” into “patient-centric,” we should make it participatory.

    I was a little concerned at the top when you talked about “ownership” as if it suggested one party keeping it away from the other. Folly, that would be.

  6. Yes, yes, yes.
    One of the key findings / recommendations in the e-patient white paper is “The best way to improve medicine is to make it more collaborative.” The text goes on to say we shouldn’t turn the putative “doctor-centric” into “patient-centric,” we should make it participatory.

    I was a little concerned at the top when you talked about “ownership” as if it suggested one party keeping it away from the other. Folly, that would be.

  7. I haven’t read the other comments, yet, so I apologize if I repeat something that has already been said.
    When you made your lists, did you ask any of your patients to help you make these lists? I absolutely believe you have the best interests of the patients at heart, but you still aren’t acting in the best interest of the patient if s/he is “out there” and you are “in here”. The key words are collaboration and participation.

    This phrase bothers me: “We have to have a place where we can put things down and know they are for our own eyes only.” Yes, you need to make notes to yourself, and I understand that. But if it is ABOUT me, I want to know it. If it will be passed to another doctor as part of my record, I want to know it. If only you see it, then that’s ok. We all need places to put reminders. I know this is a sensitive spot. But I have a reason to say this.

    When I saw a prominent endocrinologist after I finally realized I probably had Cushing’s Disease and had it for over 20 years, we had NO participatory or collaborative communication. I was out in 15″ after waiting months to see this doctor. I asked for and got a brief record of my visit a few weeks later. Even later, when I asked for my records from my PCP covering the last few months (I do this periodically), she included everything. And that everything included a letter and summary of my visit with the aforementioned endocrinologist.

    Dr. Endo had written things in that summary and letter that were less than truthful and very different from what I was sent. In fact, what actually went on in that visit and what was in that summary/letter were so inaccurate I was floored. And angry. And hurt. The speculations were even worse. When I told my PCP of the inaccuracies, she called and confronted Dr. Endo. Nothing was changed, nothing was done, and I was too sick at the time to pursue it. I am now reconsidering. But my PCP told me to find another endo. She would support me. And I did.

    You see, Rob, not only did my record show (and still shows) I was tested and examined by Dr. Endo in ways that I was not, it also says things like “patient is depressed”, “patient reads too much on the internet” and “patient needs bariatric surgery”. Dr. Endo didn’t even ask me to come back nor was I told this. I would never have known this if my PCP hadn’t given me her records. And it’s wrong. Very wrong that I would not know this. And very wrong because I have the testing and pathology to prove it was technically inaccurate and misleading. Life-threatening.

    Because this endo is a very prominent one, many other doctors took this as truth. I almost did. My PCP did not. Why? She knows me. God love her, it hasn’t been easy for her, but she has hung in there. And she shares with me, although it’s still paper copies printed out because their wonderful EHR doesn’t allow me to look in. It is not participatory. She is. And by being that way, she has helped save my life. She allowed me to peek inside. And it worked for both of us. If I had not done so, I would have believed Dr. Endo and I honestly believe I would be dead now.

    Patients are people. Only in medicine is information about them hidden from them. Data is meaningless unless it is organized in a useful way and presented as such. You have the power to do that. I want my data. But I also want your organization and presentation, because I pay for that. If I have to organize it, I will in order to survive. If you organize it, I want to know how and why you did it that way. It is meaningful to me. And I want to know what others are going to read about me. Good or bad, I need to know it. It might save my life.

    You and I have had some excellent dialog in the past, and I appreciate it. Thank you for keeping it up here. I know you care, and that’s so important.

    For others, I’d suggest reading more of Rob’s posts here. There are some great discussions in the comments, too. And they’ve lead to some fiery posts on my blog…lol. Thanks for being willing to do this, Rob.

  8. I haven’t read the other comments, yet, so I apologize if I repeat something that has already been said.
    When you made your lists, did you ask any of your patients to help you make these lists? I absolutely believe you have the best interests of the patients at heart, but you still aren’t acting in the best interest of the patient if s/he is “out there” and you are “in here”. The key words are collaboration and participation.

    This phrase bothers me: “We have to have a place where we can put things down and know they are for our own eyes only.” Yes, you need to make notes to yourself, and I understand that. But if it is ABOUT me, I want to know it. If it will be passed to another doctor as part of my record, I want to know it. If only you see it, then that’s ok. We all need places to put reminders. I know this is a sensitive spot. But I have a reason to say this.

    When I saw a prominent endocrinologist after I finally realized I probably had Cushing’s Disease and had it for over 20 years, we had NO participatory or collaborative communication. I was out in 15″ after waiting months to see this doctor. I asked for and got a brief record of my visit a few weeks later. Even later, when I asked for my records from my PCP covering the last few months (I do this periodically), she included everything. And that everything included a letter and summary of my visit with the aforementioned endocrinologist.

    Dr. Endo had written things in that summary and letter that were less than truthful and very different from what I was sent. In fact, what actually went on in that visit and what was in that summary/letter were so inaccurate I was floored. And angry. And hurt. The speculations were even worse. When I told my PCP of the inaccuracies, she called and confronted Dr. Endo. Nothing was changed, nothing was done, and I was too sick at the time to pursue it. I am now reconsidering. But my PCP told me to find another endo. She would support me. And I did.

    You see, Rob, not only did my record show (and still shows) I was tested and examined by Dr. Endo in ways that I was not, it also says things like “patient is depressed”, “patient reads too much on the internet” and “patient needs bariatric surgery”. Dr. Endo didn’t even ask me to come back nor was I told this. I would never have known this if my PCP hadn’t given me her records. And it’s wrong. Very wrong that I would not know this. And very wrong because I have the testing and pathology to prove it was technically inaccurate and misleading. Life-threatening.

    Because this endo is a very prominent one, many other doctors took this as truth. I almost did. My PCP did not. Why? She knows me. God love her, it hasn’t been easy for her, but she has hung in there. And she shares with me, although it’s still paper copies printed out because their wonderful EHR doesn’t allow me to look in. It is not participatory. She is. And by being that way, she has helped save my life. She allowed me to peek inside. And it worked for both of us. If I had not done so, I would have believed Dr. Endo and I honestly believe I would be dead now.

    Patients are people. Only in medicine is information about them hidden from them. Data is meaningless unless it is organized in a useful way and presented as such. You have the power to do that. I want my data. But I also want your organization and presentation, because I pay for that. If I have to organize it, I will in order to survive. If you organize it, I want to know how and why you did it that way. It is meaningful to me. And I want to know what others are going to read about me. Good or bad, I need to know it. It might save my life.

    You and I have had some excellent dialog in the past, and I appreciate it. Thank you for keeping it up here. I know you care, and that’s so important.

    For others, I’d suggest reading more of Rob’s posts here. There are some great discussions in the comments, too. And they’ve lead to some fiery posts on my blog…lol. Thanks for being willing to do this, Rob.

  9. Let me respond: First, the reason we did not include patients in the process is that the process just got started. The vision just got painted. I don’t go grab a bunch of patients whenever I get an idea. If, however, this really does become part of the business plan (and I suspect it will, but I am 1/3 owner), then patient involvement will be critical. Many/most small businesses are run on the spur of the moment, so the fact that we even have an IT team, much less meet regularly, is remarkable.
    Second: I understand the desire for a person to know everything that is written about them. I certainly think we all should have the right to get access to that information if we ask for it. But to put it all out there on the web is another matter. Here are some examples of where this is tough:
    1. In pediatrics we get caught between parents far too often. One parent is using records of visits as ammunition against others. If I know everything will be put out there for both parents to read, I will fear writing anything. What if the wrong thing is inferred? What if a parent looses custody due to a wrongly-phrased sentence?
    2. The cornerstone of the doctor/patient relationship is its confidentiality. Patients have to know what they say is between me and them. Nowhere is this more important than with Teens. When they open up about sexual activity, drug use, or simply about their real emotions about their parents, I need to be able to make note of it. How else can I or other physicians know these facts if they are not written down? If I had to publish all of this info where parents could possibly see it, I won’t write a lot for fear of breaking that trust. Why not just not give parents access? At what age? 16 makes sense, but do you want to see your 14-year old’s info if it is available? 12-year old?
    3. I often write about things I simply wonder. I don’t have supporting information, but intuition tells me there may be abuse, cancer, anorexia, or mental disease. I won’t write this down if I know patients may read it, as I don’t want them to think this is anything more than a passing thought. Worst-case scenarios are always at the back of physicians’ minds – it is important that we always rule out the worst things. To not document or have to somehow support/explain everything we say in the record will just increase the burden and make care worse.

    I find it disturbing that the focus of comments is largely on the 1% that I want to retain, rather than the 99% I am handing over. The point of this entire post was to admit that we have done it wrong – for both the patient and us. The focus on my own needs by commenters (and on Twitter) have made me defensive and frustrated. It seems like a case of looking the gift horse in the mouth.

    You just can’t make people happy, I guess.

  10. Let me respond: First, the reason we did not include patients in the process is that the process just got started. The vision just got painted. I don’t go grab a bunch of patients whenever I get an idea. If, however, this really does become part of the business plan (and I suspect it will, but I am 1/3 owner), then patient involvement will be critical. Many/most small businesses are run on the spur of the moment, so the fact that we even have an IT team, much less meet regularly, is remarkable.
    Second: I understand the desire for a person to know everything that is written about them. I certainly think we all should have the right to get access to that information if we ask for it. But to put it all out there on the web is another matter. Here are some examples of where this is tough:
    1. In pediatrics we get caught between parents far too often. One parent is using records of visits as ammunition against others. If I know everything will be put out there for both parents to read, I will fear writing anything. What if the wrong thing is inferred? What if a parent looses custody due to a wrongly-phrased sentence?
    2. The cornerstone of the doctor/patient relationship is its confidentiality. Patients have to know what they say is between me and them. Nowhere is this more important than with Teens. When they open up about sexual activity, drug use, or simply about their real emotions about their parents, I need to be able to make note of it. How else can I or other physicians know these facts if they are not written down? If I had to publish all of this info where parents could possibly see it, I won’t write a lot for fear of breaking that trust. Why not just not give parents access? At what age? 16 makes sense, but do you want to see your 14-year old’s info if it is available? 12-year old?
    3. I often write about things I simply wonder. I don’t have supporting information, but intuition tells me there may be abuse, cancer, anorexia, or mental disease. I won’t write this down if I know patients may read it, as I don’t want them to think this is anything more than a passing thought. Worst-case scenarios are always at the back of physicians’ minds – it is important that we always rule out the worst things. To not document or have to somehow support/explain everything we say in the record will just increase the burden and make care worse.

    I find it disturbing that the focus of comments is largely on the 1% that I want to retain, rather than the 99% I am handing over. The point of this entire post was to admit that we have done it wrong – for both the patient and us. The focus on my own needs by commenters (and on Twitter) have made me defensive and frustrated. It seems like a case of looking the gift horse in the mouth.

    You just can’t make people happy, I guess.

  11. It’s me again….
    First, I admire what you are attempting. I know it’s tough. However, I hope it’s not about making people happy but about doing what is right. You will never make everyone happy all the time.

    I’ve read the other comments now, and I see they pushed the collaborative/participatory part of the patient issue. Good. And I see your quandary with what to share and what to write. My question to you: Are these things you write (but don’t want to share with the patient) shared with others? Anyone?

    If the answer is yes, then I believe the patient should know what is being shared about him/her.

    Putting it on the web…Again, I believe it should be there for the patient to access AND RESPOND TO, and no one else but the patient should have that right . It should be the patient’s decision about who gets to see it besides you and s/he.

    Minors… that’s another issue, but you cannot decide who has legal authority over the child. The parent(s) who have the legal right to access paper copies would have access to web right’s, too, I presume. It really is no different. Again, if you have notes you don’t want one to see, it seems moot as long as those aren’t passed to other medical professionals who will treat that child. What am I not seeing here? (Honest question….you are teaching me a lot.)

    Thanks…

  12. It’s me again….
    First, I admire what you are attempting. I know it’s tough. However, I hope it’s not about making people happy but about doing what is right. You will never make everyone happy all the time.

    I’ve read the other comments now, and I see they pushed the collaborative/participatory part of the patient issue. Good. And I see your quandary with what to share and what to write. My question to you: Are these things you write (but don’t want to share with the patient) shared with others? Anyone?

    If the answer is yes, then I believe the patient should know what is being shared about him/her.

    Putting it on the web…Again, I believe it should be there for the patient to access AND RESPOND TO, and no one else but the patient should have that right . It should be the patient’s decision about who gets to see it besides you and s/he.

    Minors… that’s another issue, but you cannot decide who has legal authority over the child. The parent(s) who have the legal right to access paper copies would have access to web right’s, too, I presume. It really is no different. Again, if you have notes you don’t want one to see, it seems moot as long as those aren’t passed to other medical professionals who will treat that child. What am I not seeing here? (Honest question….you are teaching me a lot.)

    Thanks…

  13. Your lists are great. I don’t think you don’t need to formally survey patients about this. In dealing daily with information requests, you already know what they ask for. You also know the information you’d like to give them.
    1) At my PCP’s office, this information is all on one form – signed and dated. At every appointment, the receptionist checks to see when it was last updated; if it’s more than a year old, an update is required prior to seeing the doctor.

    2) It would be a huge time saver for my doctor’s staff if I could go online to confirm/update my meds list prior to an appointment with my PCP.

    I am never sure if my PCP wants the other info. Sometimes I offer copies of consult notes or test results that he didn’t receive a copy of, but I don’t want to overwhelm him with data that he doesn’t need.

    Where do consult reports fit in the information that is available to patients? Reading one sentence in a four-page report written to my PCP by a specialist allowed me to tie together weird symptoms that have plagued me for eight years. Neither doctor made the connection because there are things that I never thought worth mentioning. I can provide better information if I know what it is the doctor is looking for.

    3) The ability to go online and see these items would make my life simpler. I always have the lab mail me a copy of my results. At every doctor’s visit, I write down height, weight, bp, etc. (One time it was obvious that the new nurse was rushing and a bit sloppy, and when he announced my baby’s length, I joked, “Wow, he shrank two inches since his last appointment.” The nurse started over and did the job right.) I keep a running list of my whole family’s medical appointments. It would be much easier to just go online later to grab the data.

    Given the concerns you stated, “problem list” probably belongs on list four, not list three.

    4) Most of the comments are about list four because the other things aren’t controversial. People already know their address and how many kids they have. What we don’t know is the doctor’s interpretation of what occurred at our appointments. It’s okay to keep this information available only by request – that makes it just a little more secure.

    I’d agree with Robin, “If it will be passed to another doctor as part of my record, I want to know it. If only you see it, then that’s ok.

  14. Your lists are great. I don’t think you don’t need to formally survey patients about this. In dealing daily with information requests, you already know what they ask for. You also know the information you’d like to give them.
    1) At my PCP’s office, this information is all on one form – signed and dated. At every appointment, the receptionist checks to see when it was last updated; if it’s more than a year old, an update is required prior to seeing the doctor.

    2) It would be a huge time saver for my doctor’s staff if I could go online to confirm/update my meds list prior to an appointment with my PCP.

    I am never sure if my PCP wants the other info. Sometimes I offer copies of consult notes or test results that he didn’t receive a copy of, but I don’t want to overwhelm him with data that he doesn’t need.

    Where do consult reports fit in the information that is available to patients? Reading one sentence in a four-page report written to my PCP by a specialist allowed me to tie together weird symptoms that have plagued me for eight years. Neither doctor made the connection because there are things that I never thought worth mentioning. I can provide better information if I know what it is the doctor is looking for.

    3) The ability to go online and see these items would make my life simpler. I always have the lab mail me a copy of my results. At every doctor’s visit, I write down height, weight, bp, etc. (One time it was obvious that the new nurse was rushing and a bit sloppy, and when he announced my baby’s length, I joked, “Wow, he shrank two inches since his last appointment.” The nurse started over and did the job right.) I keep a running list of my whole family’s medical appointments. It would be much easier to just go online later to grab the data.

    Given the concerns you stated, “problem list” probably belongs on list four, not list three.

    4) Most of the comments are about list four because the other things aren’t controversial. People already know their address and how many kids they have. What we don’t know is the doctor’s interpretation of what occurred at our appointments. It’s okay to keep this information available only by request – that makes it just a little more secure.

    I’d agree with Robin, “If it will be passed to another doctor as part of my record, I want to know it. If only you see it, then that’s ok.

  15. @Robin: “Putting it on the web…Again, I believe it should be there for the patient to access AND RESPOND TO, and no one else but the patient should have that right . It should be the patient’s decision about who gets to see it besides you and s/he.”
    In a perfect world, yes, but who is paying for this multiply-vetted, HIPAA-compliant web delivery system with encrypted data storage and the like? That’s great for a lg doctor practice, a full-service clinic, and of course hospitals, but your average 2-4 doctor practice? Solo practitioner?

    Your quote below gives me the perfect example:
    “Minors… that’s another issue, but you cannot decide who has legal authority over the child. The parent(s) who have the legal right to access paper copies would have access to web right’s, too, I presume. “

    Again, in a perfect world. In the real world, said parent could go into their 16-year-old’s room, *potentially* look at a web history and a still-active session and see that their teenage daughter had discussed how her STDs were progressing when if they had made the request to see the records at the doctor’s office, they’d be summarily denied (I sure hope by age 16 all states consider them medically independent for this). The physician can *easily* with reasonable security take full control of their in-office EMR and/or paper file room; it’s a Pandora’s box to open it to the world under a thin veil of SSL/encryption, challenge/response ID, etc.

    Pick two:
    Cheap Easy Secure

  16. @Robin: “Putting it on the web…Again, I believe it should be there for the patient to access AND RESPOND TO, and no one else but the patient should have that right . It should be the patient’s decision about who gets to see it besides you and s/he.”
    In a perfect world, yes, but who is paying for this multiply-vetted, HIPAA-compliant web delivery system with encrypted data storage and the like? That’s great for a lg doctor practice, a full-service clinic, and of course hospitals, but your average 2-4 doctor practice? Solo practitioner?

    Your quote below gives me the perfect example:
    “Minors… that’s another issue, but you cannot decide who has legal authority over the child. The parent(s) who have the legal right to access paper copies would have access to web right’s, too, I presume. “

    Again, in a perfect world. In the real world, said parent could go into their 16-year-old’s room, *potentially* look at a web history and a still-active session and see that their teenage daughter had discussed how her STDs were progressing when if they had made the request to see the records at the doctor’s office, they’d be summarily denied (I sure hope by age 16 all states consider them medically independent for this). The physician can *easily* with reasonable security take full control of their in-office EMR and/or paper file room; it’s a Pandora’s box to open it to the world under a thin veil of SSL/encryption, challenge/response ID, etc.

    Pick two:
    Cheap Easy Secure

  17. Enrico, cost is a terrible factor, but it’s coming regardless. Why not do it right? There is some great discussion over on e-patients.net about this. I think you’d really enjoy reading a lot of it. My question is, what is the cost if we don’t do this?
    The best scenario (or at least one that would work) is to have one available at low-cost or free. It stands to reason it’s cheaper to develop a great EMR/PHR combo (with P being both “patient” and “participatory”) one time and maybe even have Uncle Sam pay for it than to have all sorts of non-compatible software systems. I don’t have answers, but I do know it can be done. If we can have secure systems for banks and access them, banking via internet, we can do it for patient records.

    (This is a good place to start on epatients.net: http://e-patients.net/archives/2009/04/imagine-if-someone-had-been-managing-your-data-and-then-you-looked.html )

    Any 16 y.o. can leave anything open to discussion for parent to find. Facebook, chat, etc…. We can “what-if” ourselves to death. Instead we need to decide when a “child” becomes responsible for his/her medical record. Right now, can a parent go to the doctor’s office and request a hard copy of it? Same rules apply. The rules aren’t changing, just the access. The gray area here is the information that gets “hidden”. My premise is if it is going to be shared with other medical professionals, then I should have access, too. With a minor, there will have to be a decision about the age of accountability. I wonder how they do this in the UK?

    Excellent points and excellent discussion. (Since I’ve been side-tracked while writing this, othes may have commented and I apologize if I’m redundant.)

  18. Enrico, cost is a terrible factor, but it’s coming regardless. Why not do it right? There is some great discussion over on e-patients.net about this. I think you’d really enjoy reading a lot of it. My question is, what is the cost if we don’t do this?
    The best scenario (or at least one that would work) is to have one available at low-cost or free. It stands to reason it’s cheaper to develop a great EMR/PHR combo (with P being both “patient” and “participatory”) one time and maybe even have Uncle Sam pay for it than to have all sorts of non-compatible software systems. I don’t have answers, but I do know it can be done. If we can have secure systems for banks and access them, banking via internet, we can do it for patient records.

    (This is a good place to start on epatients.net: http://e-patients.net/archives/2009/04/imagine-if-someone-had-been-managing-your-data-and-then-you-looked.html )

    Any 16 y.o. can leave anything open to discussion for parent to find. Facebook, chat, etc…. We can “what-if” ourselves to death. Instead we need to decide when a “child” becomes responsible for his/her medical record. Right now, can a parent go to the doctor’s office and request a hard copy of it? Same rules apply. The rules aren’t changing, just the access. The gray area here is the information that gets “hidden”. My premise is if it is going to be shared with other medical professionals, then I should have access, too. With a minor, there will have to be a decision about the age of accountability. I wonder how they do this in the UK?

    Excellent points and excellent discussion. (Since I’ve been side-tracked while writing this, othes may have commented and I apologize if I’m redundant.)

  19. I think Enrico’s point on cost is that a small office like mine can’t afford doing things well (in general). Ironically, my ability to do this sparked the discussion we had today.
    It’s a strange world.

  20. I think Enrico’s point on cost is that a small office like mine can’t afford doing things well (in general). Ironically, my ability to do this sparked the discussion we had today.
    It’s a strange world.

  21. My health care system allows patients to check online:• Upcoming tests needed (Colonoscopy, etc)
    • Immunizations
    • Lab results
    • Visit schedule – past and present
    • Previous vital signs
    • Recommended schedule based on their diseases
    • Medication List

    Only the results from visits to my PCP are posted. If I want info from consultants or surgeries, I would have to contact each physician’s office myself.

    We can request medication refills, schedule appts & email simple questions or comments to our doctor. Recently I used the site to let my dr know I was stopping a medication because of side effects. It was something she’d not have otherwise known until my next appt. in a year. She emailed me back and asked me to come in to see her to discuss the problem to see if we could come up with a better solution.

    Sounds like you’re on the right track to me.

  22. My health care system allows patients to check online:• Upcoming tests needed (Colonoscopy, etc)
    • Immunizations
    • Lab results
    • Visit schedule – past and present
    • Previous vital signs
    • Recommended schedule based on their diseases
    • Medication List

    Only the results from visits to my PCP are posted. If I want info from consultants or surgeries, I would have to contact each physician’s office myself.

    We can request medication refills, schedule appts & email simple questions or comments to our doctor. Recently I used the site to let my dr know I was stopping a medication because of side effects. It was something she’d not have otherwise known until my next appt. in a year. She emailed me back and asked me to come in to see her to discuss the problem to see if we could come up with a better solution.

    Sounds like you’re on the right track to me.

  23. I’m happy enough with your idea as written for a first draft. As to who owns the data, I think the concept of ownership isn’t the real point here; it’s more important to note that the PHP of record (presumes that most people register with one PHP practice, even if they go elsewhere for specialist services) would be the data custodian, and responsible for the integrity of the record, disaster recovery etc.
    With regard to the confidentiality point, and ignoring the special cases of adults who are not legally competent, there’d be no real teenager confidentiality issues under UK law, since you become legally competent at 12 (younger if female), so parents would have no right to see their teenagers medical records anyway. However, the subject would have the right to see the entire file, and request anything they considered to be inaccurate to be changed. That said, you’d not have to change it if it was a matter of fact rather than opinion.

  24. I’m happy enough with your idea as written for a first draft. As to who owns the data, I think the concept of ownership isn’t the real point here; it’s more important to note that the PHP of record (presumes that most people register with one PHP practice, even if they go elsewhere for specialist services) would be the data custodian, and responsible for the integrity of the record, disaster recovery etc.
    With regard to the confidentiality point, and ignoring the special cases of adults who are not legally competent, there’d be no real teenager confidentiality issues under UK law, since you become legally competent at 12 (younger if female), so parents would have no right to see their teenagers medical records anyway. However, the subject would have the right to see the entire file, and request anything they considered to be inaccurate to be changed. That said, you’d not have to change it if it was a matter of fact rather than opinion.

  25. @Rob I said nothing about your practice much less what it can do well, at all or in general. My reply was at Robin, who seemed to want fine-grained controls over who sees what when under which [special] circumstance, and all I was saying was that the more “customizations” are made, the more they cost, the more they open up potential problems outside the deliverable product one is implementing/purchasing if it’s not part of the written capabilities/deliverables. Lastly, I made the point that there definitely is a huge difference between the medical record in the doctor’s office vs. that same medical record on the internet for the patient to see/edit at home; the two aren’t even in the same ballpark in terms of the kinds of protections that need to be in place.
    It’s a strange world indeed if you took any of the above to be a criticism of your practice or this initiative.

  26. @Rob I said nothing about your practice much less what it can do well, at all or in general. My reply was at Robin, who seemed to want fine-grained controls over who sees what when under which [special] circumstance, and all I was saying was that the more “customizations” are made, the more they cost, the more they open up potential problems outside the deliverable product one is implementing/purchasing if it’s not part of the written capabilities/deliverables. Lastly, I made the point that there definitely is a huge difference between the medical record in the doctor’s office vs. that same medical record on the internet for the patient to see/edit at home; the two aren’t even in the same ballpark in terms of the kinds of protections that need to be in place.
    It’s a strange world indeed if you took any of the above to be a criticism of your practice or this initiative.

  27. Not nested for whatever reason, but I guess you mean me. Under UK law you’re normally deemed competent to manage your own affairs (if not enter certain binding contracts) at 12; examples of things you can do at 12 are inspect your medical records, give/withhold consent for medical procedures, write a will…

  28. Not nested for whatever reason, but I guess you mean me. Under UK law you’re normally deemed competent to manage your own affairs (if not enter certain binding contracts) at 12; examples of things you can do at 12 are inspect your medical records, give/withhold consent for medical procedures, write a will…

  29. Jan Oldenburg

    Thanks for such a thoughtful post on this topic! We have been wrestling with many of the same issues, trying to figure out how to walk the line between what we “own” and are accountable for in the record and what are the things that should be controlled by the patients, and how we somehow respect both sets of needs. I look forward to further dialog about this.

  30. Jan Oldenburg

    Thanks for such a thoughtful post on this topic! We have been wrestling with many of the same issues, trying to figure out how to walk the line between what we “own” and are accountable for in the record and what are the things that should be controlled by the patients, and how we somehow respect both sets of needs. I look forward to further dialog about this.

  31. Bravo for at least having an open mind. I’m married to a physician and we have these debates often. I usually stop discussing when he slips and says “… my patient records” because the information he is referring to is on me… not him. He usually ends the conversation when we can’t agree on how to maintain those “sensitive” notes that patients shouldn’t be privy to.
    What if your suggestion was applied in reverse: The patient was able to pre-record symptoms and current history before showing up for an appointment. The physician could add notes once the visit took place, but couldn’t change the original record. The physician would also add whatever diagnosis, treatment plan, etc. was recommended, and the patient could add their own response and agreement.

    It comes down to WHO the record belongs to. If the information is a record of my health, as the patient I would say it is mine. If you argue you collected the information and expertise therefore it is yours, I would wonder if you would be okay with your auto mechanic controlling your auto repair records. He could argue that you should rely on him to decide how much your are capable of understanding when it comes to a modern engine.

  32. Bravo for at least having an open mind. I’m married to a physician and we have these debates often. I usually stop discussing when he slips and says “… my patient records” because the information he is referring to is on me… not him. He usually ends the conversation when we can’t agree on how to maintain those “sensitive” notes that patients shouldn’t be privy to.
    What if your suggestion was applied in reverse: The patient was able to pre-record symptoms and current history before showing up for an appointment. The physician could add notes once the visit took place, but couldn’t change the original record. The physician would also add whatever diagnosis, treatment plan, etc. was recommended, and the patient could add their own response and agreement.

    It comes down to WHO the record belongs to. If the information is a record of my health, as the patient I would say it is mine. If you argue you collected the information and expertise therefore it is yours, I would wonder if you would be okay with your auto mechanic controlling your auto repair records. He could argue that you should rely on him to decide how much your are capable of understanding when it comes to a modern engine.

  33. Most of the information is yours; but not all of it. My notes are meant for me. I write them to help me give you the help you need. If I knew my patients were reading my notes, I would write very differently. I would have to explain better and never hit grey areas. You can have all the data. You can have my exam and what I order and what your symptoms are. But I have to have something that I use to do my job. That was the initial purpose of the chart – notes to keep track of things so the docs can do their job. Insurance companies turned them into billing engines. Lawyers turned them into lawsuit traps. But the subjective thoughts I write down don’t belong to the patient. They are my own opinion and not theirs. This is a very small part of the record, but one that patients would suffer from if they took it over. Docs couldn’t do their job any more. It’s already hard enough.

  34. Most of the information is yours; but not all of it. My notes are meant for me. I write them to help me give you the help you need. If I knew my patients were reading my notes, I would write very differently. I would have to explain better and never hit grey areas. You can have all the data. You can have my exam and what I order and what your symptoms are. But I have to have something that I use to do my job. That was the initial purpose of the chart – notes to keep track of things so the docs can do their job. Insurance companies turned them into billing engines. Lawyers turned them into lawsuit traps. But the subjective thoughts I write down don’t belong to the patient. They are my own opinion and not theirs. This is a very small part of the record, but one that patients would suffer from if they took it over. Docs couldn’t do their job any more. It’s already hard enough.

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