Evaluation of Cloud-based Personal Health Records (PHR)

Course Title : Capstone Project Course Number : ETM 506 Instructor : Professor: Paul R. Newman; Authors : Abdussalam Alawini Ying Liu Term : Spring 2011

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Table of Contents Abstract ........................................................................................................................................... 3 1. Introduction ............................................................................................................................ 3 2. Problem Statement ................................................................................................................. 4 3. Methodology ........................................................................................................................... 4

3.1 Literature research................................................................................................................ 4 3.2 Interview ............................................................................................................................... 7

4. The Solution- Proposed PHR system ....................................................................................... 7 5. Implementation ...................................................................................................................... 9

5.1 Implementation Obstacles .................................................................................................... 9 5.2 Implementation Steps ......................................................................................................... 11

Recommendations ......................................................................................................................... 11 6. Conclusion ............................................................................................................................ 12 7. Bibliography .......................................................................................................................... 13

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Abstract Patient personal health records are now managed and controlled by different healthcare providers. Each of these healthcare systems maintain its own local database and preclude other providers as well as patients from accessing it. Currently, there is no centralized patient health records data repository that contains accurate medical records provided by hospitals and controlled by patients. In this paper, we have investigated the implementation of cloud-based personal health records. A system that will give patients an instant access and control over their lifelong medical records in a single data repository that is stored on the cloud data centers. Our study concludes that cloud computing does have the potential for a significant impact on medical outcomes and operational efficiency. It also shows that most of cloud-based PHR barriers are NOT technology related, but rather are rooted in political, financial and ownership issues. Based on healthcare experts’ inputs as well as the extensive literature research we’ve done, we strongly recommend customer owned and controlled cloud-PHR system that will help solving all the issues caused by current healthcare data exchange infrastructure.

1. Introduction Since the early introduction of Electronic Medical Records (EMR), healthcare services have improved significantly. EMR systems provide an effective way of managing and maintaining patient records within a healthcare facility. However, EMR systems are stand-alone systems that have no mean of communication with other EMR systems managed by different healthcare providers. Additionally, patients have neither access to nor control over their health records. The issue here is that patients need to transfer their healthcare records between different healthcare organizations. Currently in the United States, most patients receive care from a variety of healthcare providers. One recent study found that the typical Medicare patient receives care from seven physicians spread across four organizations in a single year.(Pham, Schrag, O’Malley, Wu, & Bach, 2007) With the current healthcare data exchange infrastructure, patients’ records mobility across providers is a very complicated process that is inconvenient, and wasting valuable time and resources. Average American citizens change their jobs frequently. From the statistics provided by labor department, there is about 24% of the population change their jobs less than a year, and about 13% have a contract for one to two years. On average, a person has seven careers in a lifetime (Carl Bialik, 2010). Moving from one place to another is also very common in the U.S, according to the information provided by US census Bureau, there is overall 14 percent of the population moves annually. 59% of them are moving within the same county, while the rest are move to another county, state or country, which is more than 16 million people (David Bancroft Avrick, n.d.). Getting a new job or moving to new location more likely means switching to another healthcare plan with all historical health records. As a result, patients will have their health records spread across multiple healthcare providers’ local databases. Moreover, when people travel for business purpose, or for a vacation, they need to have instant access to their

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health records, especially in case of emergency. Overcoming all these issues requires different approaches of managing, accessing and controlling patients’ personal health records. In this study we propose Personal health record (PHR) system as a new approach to organize healthcare information. A PHR is meant to address the health information needs of the individual patient or consumer. Individuals own and manage the information in the PHR, which comes from their healthcare providers. (Tang & Lansky, 2005) The records kept by a patient to make his or her navigation through the American healthcare system more efficient.

2. Problem Statement Currently, there are no neither patient-owned nor controlled central personal health records systems that allow patients to access their lifelong medical records from all their healthcare providers. As a result of the lack of centralized patients’ records data repository, drug to drug interactions may occur because of prescription conflicts, which may end with severe consequence. Additionally, different healthcare organizations use various information systems, which becomes barriers when patients what to transfer their healthcare records. Patients need to request their historical health record and wait for couple weeks before hospitals print and mail the hard copy of health records. Moreover, Health care info is not shared with different healthcare providers systems, which cause duplicated tests and increase overall healthcare costs. And there is no fast access to patient critical health information in emergency cases.

3. Methodology The methodology of project is focused on literature research and interviews with experts from different areas in health care system in order to identify the problems, current healthcare system situation, the possible solution, and obstacles and barriers during the implementation of the PHR system. 3.1 Literature research Health care IT support systems are subject to variety of development and updates during their life cycle. Cloud computing is the idea of providing a platform for utilizing software and hardware remotely without the need for sophisticated terminals. The need for computer hardware and in-house software, which cost a lot of money to maintain, will be terminated by the use of cloud computing. As a result, the infrastructure of the healthcare IT systems platform will be simplified and more efficient Currently there are three major approaches of PHR system. The first approach is Health Information Exchanges (HIE). It is often built on different, often proprietary information systems to be able to share certain kinds of data. Their purpose is to locate all currently available electronic information on a patient from multiple sources and present it in an integrated format to

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any physician who is authorized to view it. (PCAST, 2010) This approach keeps the already installed EMR systems across different hospitals, pharmacies, and medical laboratories and providing a coordination system. For example, Fujitsu from Japan has an interface with universal standard that establish a regional medical care network among multiple medical institutions based on standard format. Its future plans for PHR is to associate data in the cloud. It plan to make use of cloud computing by integrating its current HER with the cloud in order to provide a secure, efficient, accurate and easy to access individualized health care system. (Takeharu Sonoda, 2011) In the United States, there were more than 190 HIE initiatives by 2009, but only about one-third were fully operational. (eHI, 2009) The reasons lie in that most HIEs are based on standardized record formats or integrated care systems. Others link a range of proprietary systems. They cannot readily be scaled. Another approach is web-based healthcare providers PHR. Some healthcare have implemented legacy systems that give patients limited access to their HR info and functionality, while actual EMR are not accessed. For example, Kaiser’s IT system allows patients to access online data and communicate with their physicians using secure messaging. More than 3 million Kaiser patients are registered for this feature, and over 100,000 access the system on a given day. A study showed that this IT infrastructure empowered by HealthConnect led to a 26.2 percent decrease in total office visits over four years. (Chen, Garrido, Chock, Okawa, & Liang, 2009) However, Kaiser’s system is a closed one that does not communicate easily with other systems or networks. It is the doctor-centered production system, in which healthcare records are managed and owned by the healthcare organization. Patient can only access to limited health information and it is difficult for them to transfer healthcare data. The third application is patient-managed PHR system, such as Google Health and Microsoft HealthVault. They provide a single repository to organize and store patient health information online. All information entered and managed by patients. PHR Technology Maturity We investigated the maturity of PHR system by using a tool called bibliometrics Analysis. It is an indicator of the technology evolvement in a certain field and commonly used in engineering and technology management. The correlation between the cumulated number of the published papers and the development of subject fields reveals the position of technology development in its life cycle. In our study, we used the key words “health record” or “Cloud-based” to search for the papers in databases such as Alt HealthWatch, Computer Source, health Source - Consumer Edition, Health Source - Nursing/Acadmic Edition, Inspect, Legal Collection and library, Information Science & Technology Abstracts. The bibliometrics analysis shows that the number of research paper increases rapidly since year 2005, which indicated that the research on cloud based PHR system is emerging quickly since year 2004.

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Figure 1. Bibliometrics Analysis

After conducting bibliometrics analysis, we applied Fisher Pry forecasting model. Fisher Pry model can forecast a technology life cycle by using mathematical prediction model (equation). Implementing the results of bibliometrics analysis, we explored the future evolvement of PHR and when it reaches its maturity.

Figure 2. Fisher-Pry Forecasting Model

From the figure shown above, the PHR system is in the beginning of emerging phase, and the maturity phase would be around year 2020.

0102030405060708090

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010Cumulative number of papers

Year

# of paper

PHR Introduction

Emerging Phase

Maturity Phase

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3.2 Interview Along with literature research, we’ve interviewed six experts in health care field. We’ve contacted experts in different specialties of healthcare administration and healthcare givers and conducted interviews in person with each interviewee. Experts’ inputs are very important to understand current healthcare legacy systems, to investigate the obstacle of implementing new IT system in the healthcare industry, and to evaluate the chances of success of a cloud-PHR system. Our first interviewee was Mr. Andy Davidson, the CEO and President of Oregon Association of Hospitals & Healthcare Systems, has been engaged at the intersection of healthcare policy and politics for 25 years. He provided us with a high level view on the communication among hospitals as well as the interactions between hospitals and government. Ms. Ann O’Connell, the associate Hospital Director of OHSU, had intensive experiences in adapting EPIC, legacy EMR system that was recently implemented in OHSU, and experienced in implementing healthcare system. She has a deep insight on the adaption issues of healthcare systems and how it could affect the overall productivity of healthcare provider. Steve Gordon, MD is an internist from Kaiser Permanente. He provides an insight from the perspective of healthcare giver. Dr. Gordon has been using EMR system for over 15 years and has important information about the limitation of current legacy systems. Jody Pettit, MD, has used to be the strategic work group lead in the Certification Commission for Healthcare Information Technology. She engaged in a government project which evaluated PHR system thoroughly from various aspects. Jeremy Bell is the IT and Operations Manager from Willamette Dental. He offered a view on the specialized healthcare organization and has a technical IT experience with patient health records management and systems security management. Dick Gibson is the chief healthcare intelligence and informatics officer from Providence Health and Services. He propels the application of an interface with universal standard, so that the various healthcare systems can communicate and share information.

4. The Solution- Proposed PHR system The Solution: Cloud-based PHR System Based on the information we gathered from literature research and experts we interviewed, we developed technology model of the cloud-based PHR system. The figure below shows the mechanism of the cloud-based PHR system that we proposed.

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Figure 3. Cloud-based PHR System mechanism

In this patient-centered model, patients will control access to their PHR. Patient will have their personal healthcare record in the cloud, and related healthcare providers who has patients’ permission can retrieve healthcare data from the cloud. Healthcare providers can keep their current IT infrastructure if they already implemented their own healthcare infrastructure. For the small healthcare providers which do have IT infrastructure, all patient records will be stored on the Cloud. All interfaces with Cloud-based PHR will be through XML technologies which have proven to be successful in other industries The Data Access and Control in Cloud PHR System Model

Figure 4. Model for Cloud-based PHR

C-PHR Hospital B

Hospital A

Hospital C Hospital D Patient

Insurance B

Insurance A

Insurance C Insurance D

Cloud-based PHR

HC providers with EMR system

HC providers with no EMR system

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The figure above shows the data flow and data security mechanisms of cloud-based PHR. The healthcare data are stored on the cloud. Cloud encrypted databases are maintained by independent commercial manager. Patients offer their primary HC an encrypted access key to retrieve and update their healthcare data. When patients need to move to another healthcare system, they do not need to transfer their medical records at all. The hospital can retrieve the patients’ healthcare record on the cloud by using the encrypted key provided by patients. Furthermore, for insurance companies that needs to documented medical records, such as diagnostic, treatment, and/or medications in order to pay for the healthcare expenses, they can be granted limited access by healthcare providers to the required information. Accessing all patient data will be directly from the cloud with the required security and privacy majors. The keys and its limitation of access authority can be different toward various organizations and in different conditions. In the emergency case, healthcare providers can fast access to the minimum necessary healthcare record without a key to facilitate the process of ambulance treatment. Benefits across the Entire Value Chain U.S. healthcare industry has a very complex network of stakeholders. It includes patients, healthcare providers, government, insurance companies and employers. Each party can receive different benefits from the implementation of PHR system. It is crucial to make the outcome a “win-win” for each element in the value chain. For patients, it is flexible when to migrate between hospitals. There is no need to carry hard copy records when relocating. It is time saving when transferring data in emergency cases. Patients have permanent access to PHR and it reduces medical risk by automatically highlighting prescription conflicts. For healthcare providers, it increases administrative efficiency by easily retrieving PHR and share data across different providers. Hospitals can share the cost of maintaining data centers. PHR system provides an error-free process of sharing various health-care providers’ data in a single repository. For government, publicly available system will benefit the entire population by reduce cost of medical system through reducing testing duplication and operational cost. For insurance companies, fewer tests and visits will result from using cloud based PHR which will financially benefit insurance companies.

5. Implementation 5.1 Implementation Obstacles PHR system requires data exchange and aggregation which realizing the potential benefits of health IT. The health system involves a long value chain and itself is a complicated system.

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There is no an obvious or immediate path toward the implementation. Several preconditions from various aspects must be fulfilled. Regulations and legal issues A recent Institute of Medicine (IOM) report concluded that the law needs to be fundamentally reconsidered to reflect new information technologies. (Nass, S. J., L. O. Gostin, Eds., & L. A. Levit,, 2009)Meanwhile, PHR system should subject to not only the law and acts such as HIPPA, but the requirements among industry, hospitals, insurance companies and business groups as well. It is limited by the administrative burdens of obtaining data-sharing agreements at every practice and every hospital or nursing home. Financial They also have been hampered by a lack of financial incentives to develop more coordinated and efficient PHR system. The expense of PHR system including initial cost, maintenance cost, operational cost and so forth. Who will pay for that, government, medical communities, patients, or insurance companies? If multi-groups will undertake the financial burden, then what business model it would be? All of these are critical questions which need to be answered before the project even start. Meanwhile, it potentially threats to current business model of medical organizations, which lead to the reluctance of providers to share healthcare data. Technology Aside security concerns, there are technical limitations in connecting many disparate IT systems within most medical groups. Limitation results from a lack of standards to connect multiple proprietary systems. One approach is that the interface with universal standards should be settled to knitting different current systems. Patient Privacy A large majority of Americans believe that electronic health records will improve the coordination and quality of healthcare. (NPR, 2009) However, many Americans also believe that there are potential risks about unauthorized users viewing their healthcare records. For example, a 2006 survey for the Markle Foundation found that 80 percent of respondents were “very concerned” about theft or fraud, 77 percent were equally concerned about use of their records for marketing purposes, 56 percent were worried that employers would see their health records, and 53 percent expressed concerned that insurers would, too. (Markle Foundation, 2006) Publics have not seen enough security around the cloud. The cloud providers should prove that by implementing some tools such as encryption technology, it is secured enough to put the personal healthcare data in the cloud. Public Awareness Cloud-based PHR system is relatively a new term to the public. The public do not fully understand what cloud based PHR system is and how it can improve people’s life. So the demand of cloud-based PHR system is not strong enough to incentive the implementation of PHR system.

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Operational Issues Healthcare providers are reluctant to share healthcare data which results from the concerns such as data ownership, applied standard and the duration of data access once the healthcare organization departs from its cloud vendor. Moreover, even the PHR system does not require the physician to participate in any proprietary system or learn to use the PHR system from scratch, adoption issues are still exist which hampers the implementation of PHR system in healthcare organizations. U.S. healthcare industry has a very complex network of stakeholders. Making the outcome a “win-win” for each element in the value chain is crucial. 5.2 Implementation Steps Considering perceived implementation barriers and limitations from different aspects in U.S. healthcare industry that we discussed in the previous section, we proposed a possible roadmap to implement PHR system step by step.

The first step is implementing PHR system through one or two major health providers as a proof of concept. Meanwhile, a standard EMR connectivity infrastructure should be built up. After proof that cloud based PHR system is eligible in the early adapters, the PHR practice can be extended to the implementation covering regional areas, probably by state. The healthcare organizations can be subsidized by government in the short term to stimulate the adaption of PHR system. And finally when PHR becomes the standard patient records system in the whole USA, the nationwide implementation can be achieved. In consider of the PHR technology maturity, the national implementation can be launched around year 2020.

Recommendations After investigating the PHR technology and its implementation, we come up with a number of specific recommendations from various aspects. PHR Evaluation Criteria Through interviews, all our experts from different background agreed that there are multiple criteria which evaluate the value of cloud-based PHR system. The criteria can be a large scale and sophisticated. They are data security and patient privacy; easy and cost effective to implement and maintain, provides a strong value proposition to each stakeholder, standardization of database interfaces, operational and maintenance costs, ability to mine different types of data,

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reliability, better outcomes in healthcare and improve profit and operational efficiency. From our investigating, these are the most important criteria when compare different PHR models. Development Recommendations From technology aspects, The U.S. Government should continue its efforts in building a national standard for health IT data infrastructure connectivity. Implementation and Operational Cost Recommendations The U.S. Government should tax breaks for healthcare providers to assist in initial PHR development and implementation costs. It also should provide financial grants to cloud-service providers (startups or industry leaders) to incentivize the implementation of cloud-based PHR according to government standards Besides initial cost, there is operational cost. One of the approaches to deal with operational costs is that healthcare providers have to pay a monthly (or annual) subscription fee to cloud-service providers to access patient records. Meanwhile, insurance companies should pay a low monthly fee on behalf of the patient to cloud-service providers. Federal Government (or states) can pay patients fees for patients with no health insurance Data Ownership The data are owned by the patients. Patients have total control of who could access to their records. Healthcare providers can be granted access without patient permission to records that were created by them. However, patients can still give access to other healthcare providers to access these records. Data access must be limited strictly to healthcare purposes and data mining for unrelated third party commercial purposes such as advertising will be strictly denied. Moreover, patient permission can be overridden in cases of emergencies, so the minimum necessary information and the duration of data retrieval should be well defined and managed.

6. Conclusion Our study have shown that cloud computing does have the potential for a significant impact on medical outcomes and operational efficiency. C-PHR will facilitate health care data transferring and sharing. However, the Implementation of this very promising and up and coming technology is not without significant barriers. Our research has interestingly shown that most of these barriers are NOT technology related, but rather are rooted in political, financial and ownership issues. PHR should be controlled by consumers themselves. Additionally, consumer approval before transfer is very important to protect patient privacy. Finally, cloud-PHR cannot be implemented without finishing the U.S. Government efforts of establishing a standard for transferring health IT data across several providers. The benefits of Cloud-PHR system is far exceeding the risks and private and government efforts should be unified to reach this goal.

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7. Bibliography Carl Bialik. (2010). Seven Careers in a Lifetime? Think Twice, Researchers Say. Retrieved July 7, 2011, from http://online.wsj.com/article/SB10001424052748704206804575468162805877990.html Chen, C., Garrido, T., Chock, D., Okawa, G., & Liang, L. (2009). The Kaiser Permanente Electronic Health Record: Transforming And Streamlining Modalities Of Care. Health Affairs, 28(2), 323-333. doi:10.1377/hlthaff.28.2.323 David Bancroft Avrick. (n.d.). How Many People Move Each Year – and Who Are They? Retrieved June 25, 2011, from http://www.melissadata.com/enews/articles/0705b/1.htm eHI. (2009). Migrating Toward Meaningful Use: The State of Health Information Exchange. Six Annual Survey. eHealth Initiative. Markle Foundation. (2006). Survey Finds Americans Want Electronic Personal Health Information To Improve Own Health Care (White Paper). Nass, S. J., L. O. Gostin, Eds., & L. A. Levit,. (2009). Beyond the HIPAA privacy rule : enhancing privacy, improving health through research. Washington D.C.: National Academies Press. NPR. (2009). The Public and the Health Care Delivery System. Kaiser Family Foundation and Harvard School of Public Health. Retrieved from http://www.npr.org/news/graphics/2009/apr/npr_polls/ PCAST. (2010). Report to the President Realizing the Full Potential of Health Information Technology to Improve Healthcare for Americans: The PAth Forward. Pham, H. H., Schrag, D., O’Malley, A. S., Wu, B., & Bach, P. B. (2007). Care Patterns in Medicare and Their Implications for Pay for Performance. New England Journal of Medicine, 356(11), 1130-1139. Takeharu Sonoda. (2011). Evolution of Electronic Medical Records Solution. Fujitsu Sci. Tech., 47(1), 17-29. Tang, P. C., & Lansky, D. (2005). The Missing Link: Bridging The Patient-Provider Health Information Gap. Health Affairs, 24(5), 1290-1295. doi:10.1377/hlthaff.24.5.1290