Meaningful Use Expert’s “Virtual Bedside” EHR review
It’s scary and emotionally painful to be 500 miles away from your dad when he gets admitted to the ICU in the middle of the night. I learned that some of that fright can be alleviated and the pain can be eased a bit by online access to his health data.
With consent, I was able to access to the Boston hospital’s patient portal, one that was developed many years ago, long before most providers understood the potential power of patient-facing health IT. My dad got the medical care he needed and when he was released from the hospital, with his consent, I also got secure access to the discharge summary and instructions in an electronic file (standardized format—CCD or continuity of care document ) that I could open in a browser in a human-readable format.
I learned many things in a very personal way from this experience. There’s no substitute for timely, accurate information when you’re trying to help out family from afar. I could track key markers of clinical status to understand how my dad’s recovery was progressing. Reviewing the data in real time allowed me to piece together clinical data to know what questions to discuss with his doctors. I felt empowered by the data.
Specifically, I could view lab data, both his active and inactive medications, the radiology reports (for X-rays but not other scans), the cardiology reports and ECGs themselves, and the blood cultures. In addition, getting a summary of the entire stay on the day of discharge was very useful (even if it was not yet quite complete—I understood that some additional data may be returned to clinicians a few days later).
That’s not to say that it was a completely user-friendly experience, so I have offered the hospital’s IT team my own personal thoughts on opportunities for improvement. Most importantly, there were very few links to lay content for contextualization (just a few of the labs had links and the content at those links was mediocre). I was able to make sense of all of it with help from internists I work with, but a significant portion of data would otherwise have been difficult for me to understand.
That’s absolutely NOT a reason to close off access to the patient/family (I’m clearly much better able to move forward with the raw data than no data and nobody’s forcing me or anyone else to look at it). Rather, there is infrastructure that can be built to support better understanding. Data can be linked to consumer content so that context is provided for every data element. This can be done via the HL7 Infobutton standard or an XML web services platform (for example, open-source software will soon be available from the National Library of Medicine—MedlinePlus Connect—and several other content vendors already provide similar solutions). This should be done both for the online portal and the CCD/discharge summary. In addition, Kaiser Permanente recently donated to HHS its Convergent Medical Terminology that facilitates the translation of clinical terms into consumer-friendly language.
Some data were not made available to us, such as CT scan results. Although there is a document explaining exclusions from the patient-facing portal that the hospital makes available upon request (for detail, see JAMIA article on the topic ), it would be much easier if data produced on that patient but not available to patient/family was stated explicitly on each page what is not there. Without noting in the portal what diagnostic tests were performed but not reported left me wondering if critical tests were carried out and what important information the clinicians may be missing in diagnosing the case.
It’s also not clear why or how certain data are excluded. As I noted, some of the lab data were mysterious numbers upon first examination. The explanation that time is necessary for clinicians to communicate with patient/family doesn’t hold up if the patient/family is left in the dark (that is, if information is not CLEARLY communicated to the patient in some other way, which is expecting a lot more of the clinicians than is probably reasonable).
The most glaring omission was progress notes, which would have been very useful. Progress notes would seemingly be among the easier information for lay people to understand. This health system is participating in a pilot project in the outpatient setting. Pending results from the “Open Notes Project,” the hospital likely will be making those notes available for hospitalized patients and families as well.
Another functionality that the portal has available for outpatients that would have been incredibly valuable for me is secure messaging. There was no opportunity for electronic communication with the ICU or medical unit care team. Phone communication is very hard for care teams in the ICU and on the floor, so having an opportunity to exchange secure email with them would be much more convenient for them and for family members than relying solely on telephone tag.
Those areas for improvement notwithstanding, there’s no doubt that this portal is absolutely transformative from a patient/caregiver perspective. It was incredibly valuable in helping me to understand what’s going on with my dad. Now that I’ve had this experience, it would be absolutely maddening and emotionally painful if I had to go through this again without access to data. I hope that meaningful use of EHRs helps to make this kind of portal the rule rather than the exception.
Joshua J. Seidman, PhD
Director, Meaningful Use
Josh Seidman’s experience with his father is a great tease for what is to come and I agree with his celebration of the transformation that is being signal led here as well as the frustration he had with incomplete and incomprehensible information. Over the past 8 years our organization has struggled with a seemingly simpler problem – the after-visit summary – and still we have not created a totally acceptable solution – although we are making progress. A few important considerations are relevant to Josh’s experience.
First, to me, progress notes are one of the most useful parts of the record to be shared with patients, yet one of the most difficult. As noted in my own blogpost (neilcalman.blogspot.com) if we are committed to sharing progress notes we must make them comprehensible to patients. A step in this direction is eliminating all abbreviations, something our Institute is committed to starting in January if 2011. Second, we must be aware not to write things in the record that we have not discussed with the patient and his/her family -such as a guarded prognosis or a diagnosis that has not yet been discussed. Third, hyperlinks of complex terms to the National Library of Medicine Medline Plus is a great tool. We have successfully implemented this through our patient portal wher each diagnosis on the patient’s problem list is hyperlinked to the appropriate page in Medline plus. We are now in the process of working on doing the same for all common lab tests and pharmaceutical agents. Fourth, in the out-patient setting, providers need to complete their progress notes at the time of the visit for them to be available to be printed on the after-visit summary.
There are many other issues as well that will be dealt with in the coming months and years, like language access, access for people with disabilities, etc.
Most important to remember now for all of us involved is to forge ahead, bringing to use what we currently have available while understanding that like technology itself, this is a never-ending evolutionary process we have embarked upon. How exciting!
Hey Josh – I remember the meeting where I first met you, and you said “My dog has a better PHR than I do.”
Thoughts -
> here’s no substitute for timely, accurate information when you’re trying to help out family from afar.
YES! During my illness I drew on family resources 500 miles away and friends overseas. Simply impossible without IT.
> I could track key markers of clinical status to understand how my dad’s recovery was progressing.
Ditto.
> Reviewing the data in real time allowed me to piece together clinical data to know what questions to discuss with his doctors.
Ditto.
> I felt empowered by the data.
And you WERE empowered. And enabled. And, thus, engaged. You were an e-patient. And boy was this a meaningful use, eh?
(To me “patient” is a collective noun, even if people don’t spell out “patient & family engagement.” My non-proven strong gut impression is that people get a lot more engaged in care management when it’s their kid or parent who’s at stake.)
> CT scan results not visible
Huh! Mine are available, as soon as the embargo is lifted. You oughta hoot-holler about that – maybe somebody changed a policy.
Agreed about the absence of links. I say in my speeches that PatientSite was industry-leading ten years ago, and hasn’t been upgraded much since. That’s one example. Another is the overall look and feel, which is about as 1999 as they come.
But, as we both know, access to info is what matters most.
(e.g. CT scan results….)
> NOT reason to close off access
Absolutely right. See my access by medically knowledgeable friends & family; also, many many lay ACOR members have surprised people with what they can learn when lives are in trouble.
> secure messaging
My understanding (subject to correction) is that this is a function of which clinicians choose to participate. Beth Israel Deaconess does not require physicians to participate in PatientSite, and half of mine don’t. Why? Because of the screwy system where doctors are independent businesses, who don’t have to do anything they don’t feel like doing. The result is that some patients have access to these features and others have doodlysquat. I look forward to the day THAT’s over.
Agreed, too, that it would be smart to list all reports / data etc that exist, with markers for which ones are embargoed. My impression, though, is that PatientSite as it exists today has a Y2K architecture, so such changes would probably be infinitely easier with a complete makeover.
Looking forward to continued innovation – as I always say, “This is personal – your time will come. And when it does, you’ll want the system to work better than it does today.” You’re now an official case in point.
Is there planned further roll out of this throughout the country? I called my local hospital and no one there seems to know anything about this.
Dear Josh,
Thanks for writing to let me know about your blog post, I agree with colleagues above that this is a very timely discussion.
I think one of the key next frontiers of information sharing with patients online is the inpatient setting.
Most of the data/experience around sharing medical record data and messaging with patients is in the outpatient setting, I think this may partially be due to the fact that many vendor patient portal systems for the inpatient side are less mature than they are for the outpatient side.
This probably comes from a belief that inpatient information is more sensitive/harder to digest by patients and families. I think that belief, is just that, a belief, and should probably be dealt with the same way we dealt with beliefs around sharing of outpatient data 10 years ago.
In terms of what to share and when, I keep coming back to “all of it, as soon as it’s in the system.” There are just too many stories of preventable errors of not just treatment (med administration, test results), but diagnostic errors, which can change everything for a patient and their family.
For people interested in the issue of liability and diagnostic errors, I wrote this summary of several helpful articles on the topic in Health Affairs recently.
I am glad that you are (a) blogging and (b) sharing the patient experience in your work, Josh, keep it up!
Best,
Ted
I hope your dad is recovering well! How nice to have real-time access to information, however imperfect. It’s great to hear about how after-visit/clinical summaries are being used and expanded upon as a means of communicating information to patients and caregivers.
I am really excited about the potential of tools like the “Ix Infobutton” to provide well-vetted medical information to patients (and caregivers) about current patient diagnoses and procedures. As you said, having some context for understanding the data is critical. I am eager to follow the progress of efforts like this. Once patients and caregivers experience ongoing, real-time access to information, they will certainly wonder how they ever got by without it!
Joshua, I think we need role models like you to talk about ‘feeling empowered’ and bringing a change. I recently completed a qualitative study (http://tiny.cc/g3xo6) with patients and caregivers to find out ‘who’ is actually using a PHR today and ‘how’ are they using it. Not surprisingly I found that people are struggling with PHRs. People are motivated to streamline their health information but are struggling with the existing PHRs. We need to simply the user experience and give people the information to feel empowered to take positive health actions.
Josh,
Thank you for sharing very personal and emotional experience in a way that can help us all learn. For me, I saw two key points: 1) that information that is all too often locked away inside the health care system can be critically valuable for patients and their loved ones; and 2) that we can do more to make that information comprehensible and useful. Both observations point to the need to accelerate the adoption of technologies and approaches that give patients more access to data and information about them. OpenNotes, that you reference, is one (disclosure: I’m involved in the project as a funder); the blue button approach that the VA and CMS have championed is another. The value of the blue button approach, where a health care institution gives it users a simple clear way to download their data is that it relieves those institutions from the burden of having to make the information comprehensible and gives that task to the market. So companies spring up to offer translators and interpreters that make medical language meaningful, that put your lab results in context, that search for interactions among your drugs and some of the over the counter meds you’re taking. In another project we’ve been supporting, Project HealthDesign (www.projecthealthdesign.org), we’ve been advocating for quite some time that it’s the apps, not the data, that will make people healthier. And the path to getting better apps is to get the data out of the health care institutions and into standard formats and common services that can catalyze a marketplace of health apps.
Neal — I was intrigued by your comment on writing notes differently, but I couldn’t find your post. Do you have a permalink you could share?
Josh,
Thanks for sharing your experience as a remote caring family member. I do hope your dad’s outcomes are good as his recovery continues.
Of course the true value of remote consumer access to records carries far beyond just sharing information with those who care.
We know that the medical error rate in complex hospital cases is high, your involvement may have avoided errors or spotted them before harm was done.
We know that many tests are done unneededly and often at risk to the patient. Your involvement could have avoided duplication and assured optimal value from testing.
We know that overtreatment is rampant in American health care. Your involvement helps to dampen the rush toward treatment without informed consideration from the patient’s (and the caregiver’s) perspective.
It is indeed a great gift to have realtime access to the records of a loved one. And it provides the opportunity to give back by helping the health care team provide higher quality care and helping the patient gain improved outcomes.
Thanks for sharing your story.
I appreciate all of the insightful comments that have been posted in response to my blog post from last week. Also, to those of you have commented here or offline directly to me with concern for my dad, I appreciate your thoughts and assure you that he has recovered well.
Several comments highlight the importance of patient access to the record for purposes of improving patient safety. There remains a big debate about:
•When data available to clinicians should be shared with patients?
•Whether all data should be treated the same in that respect?
•How much is the right amount to share?
The comments here highlight the fact that erroneous data can lead to medical errors and that patient and family review of the record can also fill in incomplete data. Corrections and gap-filling done in real time can be critically important for certain kinds of clinical issues.
Some of these comments also highlight how real-time sharing of data with patients/families facilitates much more informed decision making. That process has been shown to create better incorporation of patients values and preferences as well as more efficient use of resources.
Steve’s point that “it’s the apps, not the data, that will make people healthier” ties to other comments and returns to one of the issues raised in the original post: The data are raw materials, but we can build tools for filtering those data that translate it into meaningful, usable information. Once patients and families have that, they can be engaged as effective partners in care management.
All of these issues raised are excellent inputs to ONC and the federal advisory committees and workgroups that we support as they develop recommendations for patient access to data in future stages of meaningful use. Please continue to provide this valuable input.
Great comments by everyone. In 1999, when we first introduced Patientsite, some clinicians asked us with disbelief – ‘You’re sharing records openly with patients?”. Now, meaningful use requires the open sharing of records and the focus has evolved to the best way to share and how to wrap data in educational materials that turn medical records into knowledge and wisdom.
In some ways, I hope that Patientsite becomes unnecessary. If every EHR, lab, and pharmacy posted data to the patient’s electronic medical home (see my blog post at http://geekdoctor.blogspot.com/2010/09/unconscious-in-emergency-department.html) then the marketplace could evolve cool new applications that run on the web, on iPhones, and on Facebook which empower patients with shared decision making tools and wellness resources.
We’ve added a Google Health and Healthvault interface to Patientsite over the past few years. Our next generation of Patientsite is likely to be much more social networking oriented as well as more interwoven with the various patient-centric platforms that are evolving in the cloud.
I look forward to being a data provider to the next generation of tools!
Hopefully this will come into existence so I can use it with my dad who is 1500 miles away. Trying to explain I laymen terms to him what the healthcare provider has told him in a visit is something that I must do regularly. Oh, how much easier would it be if I could view his records? I know this technology involves major change and demands money but we will be better off for it. I love the thought of e-mail for communication with ICU also. Great article.
I live in the middle of Kansas farm country, miles away from major medical facilities. I feel having access to a patient’s medical records (in lay terms) could be crucial to the success of in home care after a patient is released from a medical facility. A care giver could quickly recognize any obvious (non-medical) errors in the record as well as be able to understand the doctor’s expected progress for recovery.
Great discussion on a topic near and dear to distance caregivers. Caring from a Distance is a non-profit organization founded, funded and staffed by those who have been long distance caregivers. The Family Records section of our free website at http://www.cfad.org offers a complement feature to the MHR access described above. We offer a secure place for family to record information re health contacts and medical history……and a path to grant access for those who may need it for patient care. This is particularly helpful when a distance caregiver gets a call that mom or dad are on their way to the hospital and the emergency staff need to know about medicines, conditions etc.
As I read through each of these posts, what kept nagging at me is that if we are going to get to a place where this kind of transformative experience is the norm, rather than the exception, we need some pretty radical culture change. A new culture that expects patients and their caregivers vital partners in their care, rather than just participants in their care is necessary. Making information available, even if it isn’t perfect, can be a very effective way to jump-start this culture change, because experiencing the power of having information creates a new expectation. My guess is that after Josh’s transformative experience his expectation from now on will be that he will have access to his father’s information so he can be a partner in ensuring he gets the best care possible. Not having this information will no longer be acceptable to him.
Creating new expectations in both the consumer and provider communities involves a number of things, many of which are reflected in the posts here:
1) Creating an understanding by patients and their families that their partnership in their care is welcomed and expected. Withholding information does not support this kind of understanding.
2) Recognition that patients and their families play a critical role in quality. Evaluating whether or not we are meeting patient and family expectations is a signal to them that their involvement matters.
3) Recognition that patients and their families play a critical role in safety. Patients and their families act as a ‘check’ on the accuracy of information recorded by clinicians. They also provide critical information about the patient that no one else knows, since no one knows a patient better than family. As a result, they often pick up on signs and signals that there is a clinical issue long before medical staff ever could.
4) Total transparency of health information. John Halamka’s intriguing concept of the electronic medical home, if designed to be a shared space where patients and providers have access to the information they need and through which they interact in response to the information, may well be a way to “turn medical records into knowledge and wisdom” that lead to better health outcomes.
It is true that not every patient wants or can make sense of health information as it is currently presented in the medical record. But enabling all patients to access that information creates tremendous opportunity for changing expectations, especially when it prompts important conversations with care providers that would never have occurred in the absence of the information. The tools and applications that will follow from liberating this information will then serve to reinforce these new expectations.