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Handbook of Digital Homecare
Yogesan, K.; Bos, L.; Brett, P.; Gibbons, M.C. (eds)
Medical and Care Compunetics 5
Lodewijk Bos; Bernd Blobel; Andrew Marsh; Denis Carroll (eds)
Series on Health Information Technologies 137, IOSPress, 2008
Lodewijk Bos, Andy Marsh, Denis Carroll, Sanjeev Gupta, Mike Rees,
Patient 2.0 Empowerment
in: Proceedings of the 2008 International Conference on Semantic Web & Web Services SWWS08, Hamid R. Arabnia, Andy Marsh (eds), pp.164-167, 2008
Medical and Care Compunetics - the Future of Patient-Related Care,
in: Medical and Care Compunetics 4, L. Bos and B. Blobel (eds.), IOS Press, 2007 (PubMed)
Thierry Chaussalet and Lodewijk Bos,
The ICMCC second conference on "Medical and Care Compunetics"
, in: IJMI, Volume 75, Issue 9, September 2006, Pages vii-viii (PubMed)
Now that my health is improving considerably, I’m slowly picking up pieces. Slowly, as I announced previously, so I will occupy myself for the time being with EHRs and the (inter)national problems concerning their development and implementation.
What triggered this first blog post in a long time is the Dutch struggle to get to grips with this issue on a national level. This article (unfortunately, the Google translation here is faulty to say the least) from 16 January 2014 makes some amazing observations. It concerns the implementation that puts the coordination of societal support at the municipal level (”WMO”). First it is assumed that the municipalities (proposed to become responsible for the general database maintenance concerning social and health records) are in the driving seat to indicate which information about a patient can be made visible to specific parties. I would have hoped that by now it would have sunken in that the patient themselves should be in that decision making position, advised, if necessary, by their providers.
The other issue is the next paragraph where it is said that patients themselves are responsible for supervising their data and that a dedicated 3rd party supervisor is not deemed necessary. Although I’m known for advocating giving patients their own responsibility concerning their own information/data, this statement is a pile of delusory hopes. A vast majority of patients, for a plethora of reasons, are not able to exercise that responsibility. Therefore, a new “profession” should be created, a layer between providers and patients, just for monitoring and advisory purposes, maybe an adaptation of the role of nurse practitioners.
It is the more puzzling because in the previous paragraph of the above-mentioned article it is stated that the government “can’t go further than register as detailed as possible for all circumstances which data about a specific person can be processed for which purposes” (my translation, LB). In my view this is contradictory to the above.
Once again, the Dutch health ministry shows a shocking lack of understanding in which direction patient empowerment should and will go.
Lodewijk Bos, ICMCC
I am not a US citizen, so I can’t officially react to the latest news from the US patient access front nor put my opinion on the “protest page“. What is going on. First see this post from the Healthcare IT News and following see the post my friend e-Patient Dave wrote about it.
When Dave wrote me a short mail about it, I decided that I should write this post. First, I am president of a foundation that deals with the social, societal and ethical implications of computing and networking (Compunetics) in medicine and care. Second, the ICMCC foundation started it’s first internet appearance with the Record Access Portal we initiated in 2006 followed with a recommendation to the WHO on patient record access in 2007.
When I read the position of the AHA on patient record access I was shocked. I thought the original 4 days for delivering patients access was already a slow process, the now proposed 30 days are a gotspe. Unfortunately I have to generalize here (as Dave said in his post, “not all hospitals believe what the AHA letter says”), but the US hospitals are rushing to gather the incentives for implementing EHRs and now with as many words tell their patients they are not able to use them. If you use an EHR as intended, all patient data should be present in one, virtual, document, which should be available in its entirety within 24 hours. So that is why I already had problems with the 4 day term.
The fact that the AHA now says that it is not feasible to deliver in such a short notice and that they need 30 days is unbelievable. To quote Dave once more:
“Here’s what that means, specifically: when you or a relative is discharged from the hospital, instead of giving you your information promptly – to inform and empower good home care – they want to be allowed to spend that whole month gathering the information that might let you prevent readmission.”
With this the AHA admits that it does not know what an EHR was and is meant for – to gather patient information in an efficient way. It looks as if they try to find ways to stick to their old sense of ownership of the information, at the same time realizing they might be losing that battle and therefore extend the delivery time to enable themselves to avoid any possible tort processes.
It might be advised to read the Hoffman paper (E-Health Hazards: Provider Liability and Electronic Health Record Systems) from November 2009.
There is little I can do except writing this blog post and give my mental support to all who fight against the AHA position in this discussion.
As a public health information technology consulting company, it seemed unusual for STC to attend the recent 9th Annual World Health Care Congress, a three-day conference supported by all major health insurance companies, clinical provider networks, and emerging Accountable Care Organizations. The attendee list reads like a who’s who of the health care industry, all working to improve patient care while tackling today’s challenges.
But I found that the conference was valuable and relevant to STC and our mission. From keynotes to breakouts, many of the themes fell into four areas:
- Consumer Engagement
- Population Health
- Data and Analytics
Presentations touched on the value and importance of these key areas, all of which are expected to improve patient care and manage costs. There is a new focus on empowering the patient with information. Engage them in coordinating their care across specialists. Provide them with their information and determine the outcome of the care.
The goal is to examine the outcomes of not only the individual treatments but the treatments of the “patients like me” community. Use population health to determine risks and develop care strategies for member and patient populations to impact these communities before they develop chronic disease or show up in the ER. Collect data, integrate data, share data, and combine data utilizing analytics to monitor, manage, and evaluate clinical and provider practice. Ensure the consumer has current data so they can make decisions on where and what kind of care they should receive in order to maximize the success.
What does this say about traditional public health practice? First and foremost, it tells us that the public health specialist is more valuable than ever. Not, however, in the traditional sense. It tells us public health practice must move from traditional rule-driven periodic clinical data reporting, reactive event-based management and static data analysis… to proactive real time clinical knowledge-based decision support. It tells us public health specialists should be partnering with the health care community at the point of care. It tells us that when they engage the consumer, public health practitioners — experts in outcomes, population health and data analytics — will become the single source of trust and expertise to advise and guide the future of healthcare in the U.S.
Take a moment to contemplate. Kaiser in California now sends patient lab tests directly to the patient’s smart phone at the same time the results are sent to the provider. Consider that CIGNA’s new model for insurance is patient centric with a focus on a “know me” campaign that enables CIGNA to proactively develop solutions to manage care, measure outcomes, and assess risks and results of populations of common diseases, rather than just paying for clinical services. Consider the growth of retail health, community ACOs that are incentivized for care across populations. Consider the rapid uptake of electronic health records and technology to share, report, and manage data today.
Where does the public health professional sit? The smart health care organization will seat them right next to the Chief Medical Director and the CEO. The progressive organizations will take on the traditional public health mission for their members, patients, and communities. They will share data with the traditional state and local public health, but they will have no interest in knowing the health indicators that traditional public health reports a year or two in arrears. They want the health indicators of their community today and they want to impact them tomorrow.
Public health practice is not changing. It is shifting. It is more important than ever. It is about data, new data sources, real time data sources, and smart analytics. It is about proactive planning and collaborating with communities to measure the impact of programs. It is about building capacity within the health care community. It is about a sense of urgency and making a difference.
CEO, Scientific Technologies Corporation
VP of ICMCC
This blog post also appeared on the STC blog.
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