I am a caregiver for a LO, who is currently in the nursing home system. We are looking for a resource or guidance on access to Patient Health Records (PHR). My LO has suffered numerous setbacks due to lack of information access/sharing on a timely basis. I see this as a common occurrence among both ST & LT patients and their families.
It appears the CURES Act should help us with timely access to the health information we should already have. By "timely access" I mean near real-time, as in same day. Not the 30 days allowed by HIPPA, which is a major contributor to nursing home dysfunction, patient neglect/abuse, suffering or even deaths. In part, "...the CURES Act addresses Patients’ and Residents’ access to their Health Records... in order assure the highest level of care, the patient-related requirements mandate that, upon request, you make EHR data available to your residents..." In every-day terms, I believe this means the nursing homes need to make available Patient Portals, just like most of us use outside the nursing home system. Patient Portals have been a valuable part of our own healthcare tools for nearly two decades. Those patients in nursing homes have a greater need and are at much higher risk to lack of information. The nursing homes are able to hide behind the current lack of transparency.
Can anyone offer guidance or direct me to the proper resource?
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I am new to this forum, but see it says. "Get tips, advice, and support from the Caregiver Forum."
There is only one question in my post, with additional details for context.
Can anyone offer guidance on the subject of patient access to health records at SNF/LTC facilities? An additional question might be, is anyone familiar with the Cures Act, or at least parts pertaining to patient access to health records?
Do know this:
1. Whatever information is provided will be provided to ONE person only, and that is the POA or Health Care POA.
2. It is unlikely that you will get near "real time" updates from any facility. That is you will not have a portal that will tell you exactly what is going on daily. Such a thing would be enormously expensive and prohibitive.
3. A constant "need to know" in this manner may mean that there is something underlying. I worry for the fact that facilities, like any place else DO "cherry pick". It's a fact of life. At some point, with constant disruption of family demands, the outcome is usually to suggest to the POA that the elder "may be happier somewhere else". For this reason alone, if you are overall satisfied with reputation and care of your elder I would watch how many monkey wrenches I am throwing into the circle.
4. Demanding families often, for all the reasons you can imagine, result in the elder him/herself paying a price. Is that right? No. Of course not. It's wrong. HOWEVER, human limitations often result in staff feeling quizzed, judged, unappreciated. I have never seen a good result from that.
That's just my opinion. You have not said what SPECIFICALLY is disturbing you about the care your elder is being given on a daily basis.
I would love to hear and hope you'll update and I surely do wish you the very best of luck.
1) Agreed. No problem there.
2) I believe you are correct, but only in part. There is a cost. However, the NH already has this information in their electronic health records. They simply don't enable the patient interface. This is the case for the dozen or so NHs I've investigated.
3) A patient portal could have the opposite effect- fewer inquiries from family. If your LO is not able to effectively communicate their status, changes, concerns, then a portal with the notes for the day or week could reduce inquiries. I share the same concern, but you seem to suggest a hands-off approach. I feel that's (less than) half-way to abandonment.
4) Agreed and am sensitive top that situation.
Your opinions/comments are much appreciated.
My main concern is lack of transparency & communication.
The purpose of my post was to: a) get some education around patient access to health records at SNF/LTC facilities; b) see if anyone could offer guidance around the Cures Act, as it pertains to this topic. It seems the context I provided muddied the water a bit.
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You think this is a bigger issue ‘in the nursing home system’, but have you thought about changing facilities for your LO? Going to the Ombudsman is a cheap and easy way for you to take this forward for the current NH. If you see HIPPA’s time-frame rules as a “major contributor to nursing home dysfunction, patient neglect/abuse, suffering or even deaths”, you probably need to take it up politically for further legislation - perhaps after the coming election.
Kind thanks for taking the time to respond. Well, I've read parts that I thought relevant. Agreed that its certainly more expansive than PHR access. My real-time access comment is alluding the value of Patient Portals, commonly used by many, if not most people in my area. Highly useful for healthcare.
In regard to changing facilities, we are currently in one of the better facilities in our area, so count ourselves lucky. To your point, we did change from two prior facilities which were not at all good. The problem with transparency overall, and more specifically with lack of patient portals, is more systemic than facility based. In other words, the dozen or so facilities I've check do not have patient portals.
I did take the advice to contact the ombudsman again. This time referencing the Cures Act since I only recently learned of its possible requirement for NHs to enable a patient portal. Of course we are hoping that is the case. Further legislation could indeed be what's needed. Though that may not help those who need it today.
Your insights are much appreciated.
I've had discussions with two different ombudsman about PHR access. They both reference the facilities fruitless process of paper forms, snail mail, and 30 day requirement. I am hoping to confirm that the CURES Act is in-force as described. Also of interest, I recently learned the ombudsman has no enforcement power. I suspect there is still a learning curve on my end, but have found the ombudsman to be a bit of a deterrent, as likely to run interference for the facilities. I am sure others have found them more useful.