Imagine having no access to news. No communication means with the outside world. Living your life on what your locals tell you. There is an outbreak of a fatal disease in a state and you’ve no way of knowing that! You plan a trip there and you go because your local sources were as unaware as you are. You reach there only to get sick. There is nothing you can do about it, but think of all the ‘Ifs’ that could have been possible. If you would’ve known or if you had a means to know and what not!
This was what health care providers of US felt. “To err is Human.” This was mentioned in the 1999 Institute of Medicine Report, which considered medical error as one of the most significant threats in the US healthcare system. For over 20 years continuous efforts have been made to establish Health Information Exchange.
What is Health Information Exchange?
Healthit.gov defines Health Information Exchange as:
“Electronic health information exchange (HIE) allows doctors, nurses, pharmacists, other health care providers and patients to appropriately access and securely share a patient’s vital medical information electronically—improving the speed, quality, safety and cost of patient care.”
The problem with the records being kept in filing cabinets is that only a handful of people can get access to it, which isn’t a piece of cake for even them! However, if the data were in the digital form, one could access it anywhere in seconds. Providers can get the clinical data of millions of patients, which could provide meaningful insights about population health trend.
The major goals of Health Information Exchange include:
- Reduce the readmission rates
- Eliminate errors in the medication process
- Provide better diagnosis
- Reduce the duplicate testing.
History of Health Information Exchange
To encourage the centralized creation of data, Hartford Foundation had formed Community Health Management Information Systems (CHMIS) program in 1990. This was specifically meant for 7 communities defined geographically. They later faced the struggle for which they weren’t prepared for. Interoperability, inconsistent data, political support and many others which made the program cost-ineffective.
Similarly, many other HIE programs were initiated, but struggled. The biggest milestone in the journey of HIE was the Medicare Modernization Act (2003). This act authorized AHRQ and CMS to award $6 million grants to 5 different states to assess how efficient and effective the electronic transmission for Medicare Part D beneficiaries could be. There were some federally funded ones like HealthBridge in Cincinnati and the Indiana Health Information Exchange (IHIE).
Types of Health Information Exchange
- Consumer-Mediated Exchange: This provides patients access to their own health information so that they can manage it just as they manage their finances online. Patients can share their information with providers they are comfortable with, monitor their health, check bills or identify missing or incorrect information.
- Directed Exchange: It is meant for providers so that they can share the patient data (laboratory data, referrals, etc.) with other providers. Patients do not need to worry about the safety of data as it is transmitted over the internet in encrypted format to trusted providers. This form of exchange is also used to send immunization data or quality measures to CMS.
- Query-Based Exchange: This form of exchange is used by providers to get the accessible data of patients. It is useful for providers dealing with emergency situations or pregnant patients.
Troubles in Health Information Exchange
Problems in Healthcare Information Exchange are many. Benjamin Stein, MD, president and CEO of HIE Long Island Patient Information eXchange (LIPIX) expressed his views on these problems. He said, “The most important obstacles facing HIEs depend on the perspective of who is looking at them – the patients, the providers, etc. So as we move forward, we have to make sure to address all these stakeholders. There is no one-size-fits-all answer to the problems of HIEs.”
Here are some major problems faced in Health Information Exchange:
- Data Sharing: The data from various sources might be available, but it is useless if not shared! There are still a lot of operations that are being performed on narrow silos set, which has made the data delivery in exchange uneven to a great extent. The aims to reduce the cost, redundant testing, readmission, etc. come after an appropriate amount of data is available!
- Patients in doubt: Many have cited patient’s consent as the greatest challenge. The clinical data of patients plays a very important role in refining the medication process. The data has to be shared across various providers, but that could be done only after patient has authorized it. More often than not, patients refuse to authorize, if it’s not related to their treatment, but for research or something else.
- Interoperability: Hospitals and other providers have all used different sources to store the data, with different black box models. There is not set standard. This makes even the shared data useless! Either there should be a set standard, which is very difficult given the number of vendors, or there is a mechanism to solve the interoperability troubles.
- Competition: Healthy competition is ironically not making the healthcare system healthier! The competition among the providers has persisted despite the interventions by the government and fixes provided by technology. There are still some providers who are reluctant to share their data.
Dealing with the Health Information Exchange Troubles
The troubles in Health Information Exchange are a big issue because of lack of trust! Lack of trust among patients, which holds them back from sharing their personal clinical data. Government and other organizations need to work on making the data more secure. The people with whom the data is to be shared, should be able to access the data easily.
All these things are possible if we work on advancing the technology and leveraging it to our advantage. The data coming from the different black box model could be translated to one common model and used.
Imagine a provider who wants to exercise patient-centric. This provider has the latest technology solutions to identify risk and automatically engage. A patient with troublesome medical history comes to this provider, but provider has no idea because the previous provider hasn’t shared his clinical data! It’ll create a ‘gap’ in care delivery!
Wouldn’t you thank your provider if he is able to mitigate the risk of a possible acute episode before it becomes a serious issue, just by going through a set of data?
Learning from Failed ones
American medical Informatics Association couple years ago published a report. In this report AMIA found that the states where privacy laws were strict, Health information Exchange there was more efficient in exchanging data. Besides this, in this states the number of failed HIEs was also significantly lesser.
Another important issue is interoperability. For this representative from HIMSS wrote a letter to Health and Human Services emphasizing on the need of an interoperable platform. It stated how the platform would not only aid the providers, but patients too.
Our 2 cents on the Road Ahead
What lies ahead for Health Information Exchange depends on our outlook today. A few bold steps today could revolutionize HIE. Think of all the possibilities! The experience of thousands of providers could be pooled in for the treatment of one patient! All we need to do is to put competition aside and place the greater good of patients ahead of us. Let us work together and technology will guide us to the end of the tunnel!
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