By Joanne Lynn, MD

The Health Information Technology Policy Committee (HITPC) has released its preliminary recommendations for Stage 3 Meaningful Use, and is accepting public comment through January 14, 2013.  For the last few years, that  federal advisory committee has been advising Health and Human Services leaders on the development of meaningful use standards for electronic health records. HHS has released rules defining stages 1 and 2 for meaningful use, and is in the process of developing subsequent stages that the committee believes will raise the bar to “improve advanced care processes and health outcomes.”  You can find the entire request for comments document, along with instructions for commenting, here:  http://www.healthit.gov/sites/default/files/hitpc_stage3_rfc_final.pdf

The Center for Elder Care and Advanced Illness at Altarum Institute has participated in this process, commenting publically on suggested elements, and talking to various committee members about the importance of including provisions that encourage development and transfer of patient-centered care plans in the standards.  In our review of the proposed standards, we have found several categories (referred to in the HITPC document as “SGRPs”) that should be reconsidered or revised. This post details our position, and the logic behind our comments, which we will submit more formally in coming days.  We would welcome comments in response to this blog.  Your input might help us be more perceptive and effective!  We’d also encourage readers to respond on their own.  This is important, since otherwise ONC hears mostly from industry and large health plans, and not so much from so many other concerned persons.

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Virtually all of what is now proposed is, from the patient’s perspective, oddly backward-looking – documenting what has happened with the patient, but being very timid on shaping the patient’s future.  That focus is quite a mismatch with the patient’s concerns.  The patient wants his or her medical history mainly in order to shape the future.  Especially when it comes to substantial chronic illnesses and disabilities, patients and the public are most concerned about how to live well—and even just live, into the future.

The future did not matter much in a past when medical interventions mostly yielded either a cure or a death.  Those who lived resumed their ordinary lives after their gall bladder or heart attack.  Now, most of our services for frail persons yield neither cure nor death.  Mostly, when we do it right, we “tune things up” and optimize outcomes over time, with the person continuing to live with the same (or more) chronic conditions through to the end of life.  What matters to the affected person is not the “outcome” of a particular surgery or course of care but the life lived, over the rest of that person’s life.

So, the health care record we need would have substantial attention to “where we are headed” as well as “where we have been.”  The history is important for characterizing the possibilities into the future, but so is the projection of potential future courses.  Nothing is more important to patients.  In short, the next phase of meaningful use needs to begin to build the future into the medical record.  There are a number of opportunities for doing so, and these are detailed in the remainder of this post.

Specific responses to proposed standards

SGRP 105 concerning the problem list should begin to ask that the record include the goal with the problem. (For example, a problem listed as “metastatic non small cell lung cancer” would be linked with the patient’s goals, e.g., “undergoing treatment seeking long-term survival,” or “aims to avoid troublesome complications and accepts that the course will be fatal.”)

In general, medication and therapy orders should include the goal – e.g., hypoglycemic medications aiming to keep Hgb A(1)c below 7, or (an alternative) aiming to avoid glycosuria and dehydration. There is not a specific place for this in these comments, though it is a spin-off of SGRP 101 and 103.

SGRP 112 calls for an indicator of the person having an advance directive. It does not call for the actual content of the advance directive.  This seems to create dangerous partial information: knowing that a person “has” an advance directive without knowing its content creates liability, as well as the obligation to pursue getting that information without having a place to put it in the record.  It seems that some structured information should be recorded (e.g., identity of surrogate and how designated, CPR preference, preference for artificial ventilation and for artificial nutrition, and perhaps preference for hospitalization itself).  It also seems that electronic records should have a scanned version of any form that provides advance directives, including the POLST (and congeners) and any form encouraged under state law. It should be possible to give the link to one of the electronic on-line advance directive repositories.  Eventually, surely advance directives will use video – we might foreshadow that eventual need for video attachments, not just scanned versions.

SGRP 113 calls for clinical decision support, which is a very good endeavor to expand and require.  Sometime in the coming few years, we will start to use our databases to answer questions of outcomes in our systems, including those for individual patients.  Patients and families will quickly learn that the physician’s classic dodge of saying something like, “We’ll just have to wait and see,” is inadequate and unnecessary.  Patients and families may reply, “We’d like to know about the patients closest to my situation that you treated a year ago; how have they done?”  Answers could be done from databases or registries “in real time.” The patients and families can even ask prudent question about various choices in care (such as vigorous rehab, hospice care, etc.) and about alternative care systems.  The Meaningful Use requirements cannot come close to requiring this yet, but we could pave the way by encouraging documentation of functional status and outcome in the record (in standardized formats, of course, e.g., using the CARE instrument).  Some hospitals, for example, follow at least survival in their state’s vital records and therefore have in their records the fact and date of death.  The MU3 rule could create an optional entry as a signal for later growth in this area by, for example, documenting survival of EH and EP patients for at least patients dying in your state, in the half-year following service.  Or making outcomes of common and serious situations available to patients through the patient portal, so patients could see that their system had x% of patients with diabetes meeting patient-directed goals, or y hospitalizations per year or per lifetime for persons who had at least one hospitalization for CHF or COPD.  This endeavor ties to SGRP 115 on generating lists for QI and other purposes.

SGRP 119 calls for recording family history.  There is a very important parallel endeavor of recording the family situation, caregiving potential, and needs for support. It is occasionally somewhat relevant to the care of an elderly person to know what illnesses “run in the family,” but it is usually more important to know who cares for this person, who lives with him or her, what personal care they are able to do, what skills they have or can acquire, and so forth.  This is often skipped in the current hospital/physician records, leading to dramatic and disastrous errors in home care.  Just creating a space for recording the family, caregiving, and living situation and options would be a major gain and could be added as narrative for now, though some of this could readily be digitized (and that work is underway).

SGRP 205 calls for patient access to a summary of an office visit.  The same summary should be available for home care visits and residential nursing facility visits.  The summary for hospital and skilled nursing home visits is reasonably included in the overall summary, but the summary in home care and nursing facility care is parallel to that in the physician’s office.  The RFC asks for advice on what to include.  We would recommend: a summary of the situation and likely course, the problems dealt with in this visit and the related goals, and an assessment of how the patient is doing with regard to the goals and the revised plan of care (to include services in all relevant arenas, including medications, therapies, tests, social supports, caregiver issues, and others).

SGRP 302 calls for medication reconciliation at the time of transfer.  This is an important requirement.  However, medication reconciliation itself is not precisely specified.  The specifications given are mostly attentive to allergies and drug-drug interactions.  Effective medication management requires that the goals for each medication be explicit and documented.  The records, therefore, of medication prescription should have the ability to record the goal also.  This is really essential for transitions, since medications can be used in all sorts of ways and for all sorts of goals.  It is very different to have a person using insulin transferred with the goal stated as “avoid glycosuria and delirium” as compared with “maintain tight control with HgbA(1)c <7.”  Sometimes it is even difficult to discern which one or more of the patient’s problems are being addressed by a particular treatment, a problem that could be alleviated just by having the transferring physician make the goal explicit.  This also then allows development of highly useful quality measures that are tailored to the specific patient.  Later, SGRP 125 calls for a few enhancements of medication management at a future time, especially monitors of adherence and overuse.  These are useful, but they should be linked with clarity about the goals of treatment.  Without that, it will be difficult to provide optimal medication management.  The goals of treatment could be put in place now, since they require only the “slots” to record them.  Modeling adherence and overuse will require more connections and experience.

SGRP 303 requires a summary of care at the time of transition or referral and SGRP 304 calls for more to be done to record care planning at some future time.  The current proposal focuses almost entirely on the record of the past, rather than the plan for the future.  The instructions for care are limited to the next 48 hours.  That’s a help, of course, but it also matters a great deal to have plans into the future.  In some situations, the plan at the time of transfer would honestly pass the obligation of planning to the next provider, but that should be explicit.  For example, an emergency room visit might move the person to home care, with the care plan being that the person and family need comprehensive assessment and planning.  However, in the usual situation of a transition of a very sick and disabled person into or out of a hospital setting, the care plan should be much more comprehensive.  Hospital services should include a reasonable assessment of the living situation and options for support after discharge, and hospitals should expect to get a useful and comprehensive guide to the patient’s situation at the time of admission, from their out-of-hospital clinical provider team.   The electronic record at least should include substantial space for a narrative account, though some elements could readily be digitized (e.g., problem list with goals, time frame for reconsideration, general course expected (see CARE instrument for a suitable question with coded responses), caregiver identification, next care team key contact).  At this time, there is a major effort underway with IMPACT and Lantana to generate a substantial list of elements that should move with the patient.  The HIT Policy Committee had a reasonable starter list in the July 2012 set of recommendations, which is now designated for some future stage.  The main thing at this point is to get enough of a place to record a care plan, so that that electronic records and clinicians using them can gain experience and try out options.  This really needs to get underway now, and certainly by 2016, rather than being delayed into an indistinct future set of standards.

SGRP 305 calls for completing the loop of acknowledging receipt of information, at least for referrals.  There should be a parallel requirement to comment on the adequacy and helpfulness of the information, either for each individual patient or for a set of patients who use that partnering service.  There should be a requirement of regular feedback on timeliness, accuracy, and usefulness of the information transfer, not just an acknowledgement of its receipt.  At this time, this could be required just for any one partner service provider, with escalation in the future.

SGRP 127 calls for a future commitment to maintaining an interdisciplinary problem list.  This has been a requirement in home care, nursing facility care, and home care for many years.  Surely hospitals and physicians can come on board with this now, and not at some future time.

SGRP 308 calls for notice of a major event to go to at least a key member of the patient’s team.  This is a very good idea and we support it with enthusiasm.

 

 

Keywords: ONC, HIT, EHR, public comments, meaningful use