Managing Personal Health Records sing eta- ata and loud torage Mohammed Abdulkareem Alyami ∗ , Majed Almotairi ∗ , Lawrence Aikins ∗ Alberto R. Yataco † , Yeong-Tae Song ∗ Dept. of Computer & Information Sciences Towson University Towson, USA +14107043557 Email: ∗ (malyami, malmotairi, laikins, ysong @towson.edu) † Medical Director Get Well Immediate Care Towson, USA ayataco@getwellicare.com Abstract—Patient generated data or personal clinical data in general is considered an important aspect in improving patient outcomes. However, personal clinical data is difficult to collect and manage due to their distributed nature, i.e., located over multiple places such as doctor’s office, radiology center, hospitals, or some clinics, and heterogeneous data types such as text, image, chart, or paper based documents. In case of emergency, this situation makes necessary personal clinical data retrieval almost impossible. In addition, since the amount and types of personal clinical data continue to grow, finding relevant clinical data when needed is getting more difficult if no actions are taken. In response to such scenarios, we propose an approach that manages personal health data by utilizing meta-data for organization and easy retrieval of clinical data and cloud storage for easy access and sharing with caregivers to implement the continuity of care and evidence-based treatment. In case of emergency, we make critical medical information such as current medication and allergies available to relevant caregivers with valid license numbers only. Index Terms—Personal Health Records (PHRs), Personal Health Records Systems (PHRS), Dublin Core Metadata, Cloud storage, Standard Medical Codes. I. I NTRODUCTION For most of people, healthcare is considered important as we experience the increase in chronic diseases such as heart dis- ease, cancer, diabetes and asthma, which requires continuous treatment, reduces quality of life, and increases overall medical expenses [1]. According to the Centers for Disease Control and Prevention (CDC), in the USA about 610,000 people die of heart disease every year [2]. In addition, 26 million people suffer from Type I or Type II Diabetes, around 14 million have severe chronic respiratory problems such as Chronic Obstructive Pulmonary Disease (COPD) and 68 million have been diagnosed with hypertension [3]. However, many of these diseases can be prevented and managed through early detection, physical activities, a balanced diet and treatment therapy. Recently there have been more focus on preventive care or monitoring and control of the symptoms. Nowadays, there are many mobile health applications and sensors such as blood pressure sensors, electrocardiogram sensors, blood glucose measuring devices, etc. are used by the patients who monitor and control their health. These apps and sensors produce personal health data that can be used for treatment purposes, if managed and handled properly, since it can be considered patient-generated data. There are other types of personal health data that are available from various sources such as hospitals, doctor’s offices, clinics, radiology centers or any other caregivers. Aforementioned health documents are deemed as a personal health record (PHR).According to AHIMA [32], PHR can be defined as an electronic, lifelong resource of health information needed by individuals to make health decisions. However, it is not easy to collect all the relevant personal health data because of the facts that they are in different data types, available from different sources, and stored in different media and devices. To overcome such difficulties, it is desirable to have personal health data in one place where users have full control over their own clinical data. In order to be useful, the clinical data should be sharable when needed for the diagnosis and treatment. Without proper clinical information such as medical history, allergies, current medication, adverse reaction, etc. medical mistakes could occur when making medical decisions due to insufficient information. Even if a patient has complete medical history and all the necessary clinical data, if it is not shared properly among caregivers at the time of need, discontinuity in care may occur. In order to meet the needs of such scenario, a personal health record system should have the following properties robust and private storage, easy retrieval and maintenance, secure, sharable, and be able to handle emergency situations. There are two types of personal health record systems - untethered and tethered. Untethered PHR is an independent PHRS where patients have full control over their own personal health records collect, manage, and share. On the other hand, the tethered PHRS is linked to a specific healthcare providers’ EHR system where the users typically gain easy access to their own records through secure portals and see their own clinical information such as test results, immunization record, family history, etc. and also secure messaging with their collaborating clinicians. However, the participating patients need to share the cost and the information they provide may not be complete since the information sources are from one provider only. Despite all be benefits PHRs provide, the adoption rate of PHR by the general public still remains low in the US. In our previous work [16], we identified six barriers (usability, ownership, interoperability, privacy and security, portability and motivation) that cause the slow adoption of PHRs. One 978-1-5090-5507-4/17/$31.00 ©2017 IEEE ICIS 2017, May 24-26, 2017, Wuhan, China 265