A personal health record (PHR) is an internet-based electronic medical record that allows patients to electronically manage and organize their personal health information. It permits the patients to take ownership over their own healthcare information, including the ability to maintain a lifelong patient history, and to retain control over the content and access of the PHR. PHR is a separate system from the electronic or paper medical-record system maintained by healthcare providers. 
- 1 What is a PHR?
- 2 Functionality
- 3 Integration of EMRs and PHRs
- 4 Types of Information in Personal Health Record
- 5 Attributes of Personal Health Record
- 6 Potential
- 7 Benefits to patients, providers, purchasers and payers of health care from PHR
- 8 Challenges
- 9 Specialized Types of Personal Health Records
- 10 PHR systems
- 11 Reviews
- 12 References
- 13 Reference
- 14 References
- 15 References
What is a PHR?
The National Committee on Vital and Health Statistics (NCVHS) determined that there is no uniform definition of a PHR in industry or government. This lack of consensus makes collaboration, coordination, and policy making difficult. 
However, some common themes arise.
- Markle Foundation: An electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment". 
- American Health Information Management Association (AHIMA): "an electronic, universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR that is collected from healthcare providers or entered by the individual. The PHR is maintained in a secure and private environment with the individual determining rights of access, it is separate from and does not replace the legal record of any provider" 
- a PHR is the patient's interface to a healthcare provider's electronic health record
- a consumer or patient-managed health record.
PHRs offer an integrated and comprehensive view of health information, including information people generate themselves" and "The PHR is a single, person-centered system designed to track and support health activities across one’s entire life experience; it is not limited to a single organization or a single health care provider” . This definition further identifies a platform for PHR operation and incorporates the lifelong span of individual’s information collection and management. Beside owners’ ability to view their own healthcare information created by them, it provides the ability to view clinical data and information entered and or generated by their providers and medical care institutes. Furthermore, it introduces three key aspects of the PHR, comprehensive, integrated with other systems and applications, and accessible from anywhere via internet.
The PHR is a portable electronic record keeping tool that provides functions easy to use and understand, customizable to fit personal need in information retrieval, display and access, and helps individual to organize personal health information. Furthermore, helps individuals with general health education, and educates them about their personal health information. Another PHR functional attribute is that, its flexibility to expand to support evolving health needs of individual and family. 
PHR Attributes defined by The Personal Health Working Group – Markle Foundation 
- Each person control his or her own PHR, Individuals decide which parts of their PHR can be accessed, by whom and for how long.
- PHRs contain information from one’s entire lifetime.
- PHRs contain information from healthcare providers.
- PHRs are accessible from any place at any time
- PHRs are private and secure
- PHRs are “transparent.” Individuals can see who entered each piece of data, where it was transferred from and who has viewed it.
- PHRs permit each exchange of information with other health information systems and health professionals.
Results from Harris Interactive survey in April 2002 about Patient-Physician online communication - asked; “If you could do so, which of the following would you like to be able to do online with your doctor or doctors?” - shows (77%) want to ask questions without a visit to the doctor office, (71%) want to make an appointment, (71%) want to request prescriptions refills for medications, (70%) wants to receive the results of medical tests, (6%) none of these, and (4%) don’t know . This survey shows that two thirds of the people surveyed are interested in four defined key PHR functions that are not limited to these four functions. As PHR provides easy access to all of the individual health related information to view and share with the healthcare provider for care planning treatment and preventive care management, the process where PHR provides dynamic and comprehensive information set and presents it at the time of care, itself is core functionality .
The Markle Foundation Connecting for Health Initiative Group defines the internet based PHR by its functions as introducing internet based transaction and services. One function is the ability of the healthcare provider to access the PHR, not only, to view but also update information and communicate it to patient. 
Another function is the integration to the Electronic Health Record (EHR) of the healthcare setting if applicable. To use the PHR to provide certain services, the information entities in the PHR require management and maintenance beside the initial entry, a PHR function included by the Connecting for Health Initiative Group 2004 report is the management of the following type of information: identification and demographic, personal contact, medical insurance, pharmacy insurance, and medical care provider contact. Services the PHR can provide also include drug interaction checking, online prescription request and refills, and preventive service and appointments reminder. Anther set of functions that can help in documentation and data organizing is a health data tracking utility to create charts and graphs, and patient diaries to document information about pain, symptoms, and possible drugs side effects. An important function of the internet based PHR described in the report is the ability to schedule appointment on line with a health care provider. One function PHR can also provide that can store and update medical data and patient information for frequent access, is the summarization into standardized specialist visits forms or questionnaires and patient specific instructions for frequent hospital visits. Other relevant functions that can be integrated and utilized easily in the internet based PHR - defined as optional - are links to knowledge bases, and links to patient education, self-care content and consensus guidelines. Two PHR functions - viewed as benefits - that might not be often used, or even rarely, are the inclusion of Advance Directive Form and Continuity of Care Record [6-7].
Privacy Access and Control
Most privacy policies of PHR systems do not provide an in-depth description of the security measures that they use. Moreover, compliance with standards and regulations in PHR systems is still low. While PHR must be private and secure; control is by the owner who assumes responsibility for the information in it. PHR should be accessible any place any time by the individual and provide means to emergency access to provider when needed.
Some of the unanswered questions about privacy in PHR include-
- Who manages the data in the PHR?
- What data are managed?
- What is the source of information used?
- Who manages the access control to the data in the PHR?
- What types of permission exist?
- Who can receive access permission?
- Is an audit of access to data in the PHR performed? Who can see this audit?
Maintenance and Security
An audit trail is required as part of the PHR, and to maintain data integrity, data can be changed or deleted only by the original source under the given authority of the owner, and the owner decides what is incorporated into the record.
The PHR should be a standard driven tool, exchanging and communicating easily, consistent and accurately with systems. The PHR has a structured data collection and storage, and the ability to link to knowledge, educational, and other databases.
The Markle Foundation Connecting for Health Initiative Group is the first to produce a definitive set of characterizations of the PHR, list (3) contains seven attributes categories to the PHR as defined by the group.  Although the context of these attributes categories explained by the attributes and functions published by (e-HIM) group, the Markle Foundation report classified them into what is available today and which ones are not easy to achieve. With many attributes can be available today to implement in PHR, the attributes that are difficult to achieve include the entire lifelong health information records and the acquiring of the provider's legal or electronic records. Interoperability classified as an attribute available today, but only for a small number of patients, and mainly for data associated with single a source .
Integration of EMRs and PHRs
A patient can edit their PHR via a patient portal.
A personal health record "is an Internet-based set of tools that allows people to access and coordinate their lifelong health information and make appropriate parts of it available to those who need it." It includes "information from their pharmacies and insurance companies" and providers. While "the PHR is separate from and does not replace the legal record of any provider" by one definition, integration of the electronic medical record by presenting provider-entered data in the context of a web-based PHR, provides added benefits to the consumer. Securing this personal health information promotes adoption of PHRs by the consumer. 
Inclusion of secure messaging with one's provider in combination with viewing one's own clinical data allows for an interactive only relationship with the provider over a common set of health data. The technology available to present this data is primarily through creating secure data views of EMR data repositories. A security system requiring multifactor authentication and encrypted pages (SSL) is essential.
Consumer surveys indicate an interest in this functionality and additional features, such as, aggregating information from all providers, a task for regional health information organizations (RHIOs). 
Patient entered data
Benefits of Tethered PHR
Personal Health Records are private, however, society’s willingness to share information can lead to patient empowerment and knowledge. Personal Health Record 2.0, as postulated by Gunther Eysenbach  , is grounded in the belief that users freely share pertinent data with other users. Certain sections are available for a controlled set of users or the public as a whole to see. That data can then be combined and shared with a tethered EHR. There is an enhanced ability to learn and thus be empowered. Eysenbach feels this is a disruptive concept and is not without a large measure of risk .
An example of the PHR 2.0 concept is PatientsLikeMe.com  and onpatient.com . PatientsLikeMe was created as an attempt to find a cure for amyotrophic lateral sclerosis and was based on the idea that if patients are allowed to share their data with each other, better approaches to treatment could be achieved. PatientsLikeMe is the largest database of ALS patients to date, and has partnered with a company called 23andMe, Inc. to create a "genetics search engine" for the ALS community. This allows patients with ALS to share genetic information. A data intensive social network such as this can be incorporated into Eysenbach’s concept of the PHR 2.0.
onpatient was created as a moblie PHR that was a replacement for Google Health.
Types of Information in Personal Health Record
The information in PHR in its electronic version can be entered in many format and from many different sources, personally entered by the owner of the PHR, and professionally by the health care provider, manually or automatically when integrating with other professional healthcare systems and applications. The PHR serves as a core repository for personal health information that identifies the patient clinical data - similar to information in the provider version of electronic medical record - utilized by the individual or health care provider to perform actions and/or help in the joint decision making process. The key feature of this accumulation of multi source information is that its all kept and presented in one entity. List (1) contains a summary of most common information types in the PHR defined by AHIMA. For more of detailed information types and as a start point to establishing a Personal Health Record, AHIMA recommends a set (List 2) of information collected by PHR owner from the various patient medical records sources . 
Minimum Common Data Elements in PHR
- Personal Demographic Information
- General medical information
- Allergies and drug sensitivities
- Clinical tests
- Pregnancy History
Information collected by PHR owner from the various patient medical records sources
- People to contact in case of emergency
- Names, addresses, and phone numbers of physician, dentist, and other specialists
- Health insurance information
- Living wills and advance directives
- Organ donor authorization
- A list and dates of significant illnesses and surgeries
- Current medications and dosages
- Immunizations and their dates
- Important events, dates, and hereditary conditions in family history
- A recent physical examination
- Opinions of specialists
- Important tests results
- Eye and dental records
- Correspondence between provider(s)
- Permission forms for release of information, operations, and other medical procedures
- Any information wish to include about one's health, such as exercise regimen, any herbal medications and any counseling may received.
Attributes of Personal Health Record
PHR attributes can crossover some of the functions defined for a PHR and can deduce its benefits or advantages. The (e-HIM) Work Group - was formed as an initiative by AHIMA that focuses on PHR to formulate its guidelines - organized six attributes categories for PHR. 
- Ownership: Defines the owner of the PHR, as the person who controls and owns information, and decides which parts of their PHR accessible, by whom and for how long.
The PHR model that provides individuals with online access to their secured data professionally, as described by Markle Foundation, consist of two functional models .
Institutional gateway model
The institutional gateway model connects the PHR to a single institution and it is the main source of data. These gateways collect information from secured multiple services within the institution, or from secured single service
architecture models: Third-Party Repository where a third party database stores centrally data from both the PHR and provider systems with the patient consent.
The aggregator model, as an application that gathers information form the patient and from multiple professional sources with a multiple or single service, or pull data from multiple institutions across multiple types of services.
architecture models: Record locator service, where a third party has a repository of identifying information about an individual – the only thing held centrally- then authorizes and securely queries and request data for a particular patient from all the participating professional health data sources as data not held centrally, but generated on demand.
Patient health records, traditionally, have been owned and accessed by health care providers. The IOM report Crossing the Quality Chasm recommended the "patients should have unfettered access to their own medical information." HIPAA regulations mandate that patients be allowed access to their records. Patients will want access to their records online, as electronic records become more prevalent. Advantages to patient access of their records include giving patients a more powerful role in their own care, allowing them to correct inaccuracies, encouraging them to have a better understanding of their health issues, and promoting trust and communication. On the other hand, providers express concern that they will need to abridge or omit parts of the record that are sensitive and that patients could become unnecessarily concerned about things they do not understand.
Drs Halamka, Mandl, and Tang describe 7 challenges in Early Experiences with Personal Health Records:
- Should the entire problem list be shared?
- Should the entire medication list and allergy list be shared?
- Should all Laboratory and diagnostic test results be shared with the patient?
- Should clinical notes be shared with the patient?
- How should patients be authenticated to access the PHR?
- Should minors be able to have their own private PHR?
- Should the PHR include secure clinician/patient messaging?
The first 4 sharing issues were resolved over three different systems in similar ways.
- Problem lists were shared.
- Medication, and allergy lists were shared.
- Results were shared in this fashion ==1) at one system, normal results were released to patients within one day and abnormal results within 3 days so that
- all results were communicated without fail, but clinicians had a chance to communicate the results first, 2) at the second, all results were released to patients immediately except for HIV results due to state laws, and pathology and MRI/CT cancer staging results held for 1 week to allow personal clinician/patient communication, and 3) all results were shared.
- Full text clinical notes were not shared in any of the three systems.
- User authentication, critical to PHR privacy and data integrity, was by user name and password, granted by face to face identification or by written signature verification.
- In two systems, patients under 18 were not able to have their own personal PHR. In the third, a children’s hospital, the challenge was handled this way == children less than 12 had limited or no access to their record but their guardians had full access, patients 12-18 and their guardians has access to the record but specific parts could be restricted by either, and patients 18 and over had complete access and control of their records.
- All three systems used secure messaging as part of the PHR. Providers were not flooded with messages; rather electronic messages replaced a similar number of phone calls. But legal liability concerns and the fact that online medical advice is not often reimbursed were issues.
Personal Health Records (PHR) – Today and Future Potential
Health care is migrating to care centered on the individual, thus allowing the individual more interaction and participation in his or her health care. This opens new doors for individuals, permitting them to take a more active role in their health care. It allows individuals access to their health record, permits certain health information to be self-entered; requests prescription refills; retrieves copies of their health records; and tracks vital signs including blood sugars and pressures, weight and heart rate. Additionally, the PHR will provide access to health resources. New doors are also being opened for the health care provider, especially if the PHR is integrated with the electronic health record (EHR), enabling the provider to realize benefits in patient care. It will enable the provider to make better medical decisions in the treatment of the individual.
Today, online PHR services are being offered by many health care organizations and vendors. PHR systems range in complexity from stand-alone to full seamless integration with EHR systems. Each system has advantages and disadvantages. The stand-alone application allows for greater security but the information is not shared and it is doubtful whether individuals will be resolute in maintaining its currency. The preferred system is the integrated PHR.
A longitudinal (lifetime) health care record, containing relevant subjective and objective data from various sources including the individual and health care providers, should be established, thus providing a rich resource of useful data for the individual’s health care. While there are no standards for what data the PHR should contain, it is recommended that the data source be identified. Some suggested data types include: problem list; allergy; immunizations; medications; diagnostic test results; personal tracking of vital signs including blood sugars and pressures, weight and heart rate; and others. In a 2011 study by Krist et al, the authors developed a patient centered interactive preventive health record (IPHR) designed to deeply engage patients in preventive care and health promotion. The IPHR provided recommendations for preventive care based on practices recommended by the U.S. Preventive Services Task Force (USPSTF) and other organizations as well as the individual patient history. IPHR was intended to function as a longitudinal record and reminder system for patients and clinicians.
For the most part, there has been some reluctance in the adoption of the PHR. One impediment for this lack of acceptance may be attributed to the costs of such systems. Deciding who should pay, the providers, individuals, or perhaps the health care payers appears unresolved. Other obstacles may include technical issues (such as interoperability - without it data cannot be shared), legal issues (including privacy and negligence), and the level of an individual’s desire to use, maintain, and authorize sharing of their PHR. Although as a concept the PHR has great potential in improving the management of health care, there remain many impediments to overcome before it is successful.
In 2001, the Institute of Medicine published Crossing the Quality Chasm. They suggested that health care should be patient centered. At the same time. electronic health records were being developed and improved. However, compatibility from system to system has remained a large problem despite attempts at standardization such as HL7. So the electronic health record has been helpful to physicians within their own groups while unavailable to other providers. Possibly of greatest concern has been how to obtain data in an emergency.
In 2010, meaningful use standards were developed in order for physicians to obtain incentive ARRA money. One of the requirements appears to be the patient being provided access to their medical record electronically. In a study in the AMIA Annual Symposium Proceeding in 2006, a study was performed to evaluate the use of PHR's in the elderly. They described multiple barriers to their use including:
- access to PHR systems
- access to computers or devices
- cognitive disabilities
- physical disabilities
low computer or reading literacy They were able to use a PHR but the great majority required supervised help.
One suggestion for increasing the availability of information when it is needed is the Portable Personal Electronic Health Record (PPEHR). This can consist of a flash drive with a USB port or a credit card sized card with either a USB connection or possibly a magnetic strip or chip. This has been sold commercially and has been offered at very limited cost to patients who belong to certain medical practices such as Kaiser Permanente in California or Connecticut Multispecialty Group in Connecticut.
As an example, Kaiser is able to put the following information on it's drive:
- Patient Demographics
- Language Preferences.
- Contact Information for Family and Friends.
- Active Medication Problem Lists
- Immunization Records
- Lab Results from the past year.
- Medications prescribed in the past year.
- Clinic Visit Information with diagnoses and procedures in the past year.
- Hospitalizations with diagnoses and procedures.
- Most recent EKG's and chest x-rays-both readings and images.
These drives offer many advantages.
- They are completely portable and can be with a patient at all times.
- They can be read by anyone with the appropriate password.
- They are upgradable with minimal effort.
- Patients need no computer expertise. They simply have to remember a password.
- If a patient is unable to give any information, a family member is able to provide a password if this has been planned beforehand.
Security however remains a concern. They must be encoded adequately with secure passwords. In addition, they can be easily lost or stolen. Biometrics such as fingerprint identification could be used with some of these devices possibly along with an alternative digital password.
Benefits to patients, providers, purchasers and payers of health care from PHR
- Patients having greater access to their own medical information, allowing them to be actively involved in the management of their disease.
- An ongoing communication between patients and physicians, which promotes a real time response from the providers in management of acute and chronic disease.
- Providers having greater access to data that could help them in their decision making process.
- Patients and physicians are working together to manage patients’ illnesses, including to reduce pain, to improve functional outcome, and to promote adherence to medications.
- Electronic communication between patients and providers free or limit telephone and face-to-face communication that at times interfere with the workflow of the providers.
- Payers and purchasers of health care could potentially benefit from lower costs, including lower medication and chronic disease management costs.
- A study by Bouri et al speaks about PHRs in mobile format (mPHRs) which can be used during emergencies and natural disasters when EHR's are inaccessible. During Public Health emergencies health care providers who are unfamiliar with the patient can have instant access to a patient’s medical history.
References: 1.A New Health System for the twenty-first Century. Washington. National Academies Press;2001. Crossing the Quality Chasm. 2. Kim E,Modi S, Fang D, Soh CB, Kim Y. Web-based Personal-Centered Electronic Health Record for Elderly Population; D2H2 Conference, 2005. 3.Tan PC, Ash JS, Sands DZ. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. JAMIA. 2006 Mar-Apr; 13(2): 121-6. Epub 2005 Dec 15. 4. Shetty, R. Portable Digital Personal Health Record: To Bridge the Digital gap in Medical Information Storafe of Individuals with PErsonal Health Records in Flash Drives. The Internet Journal of Health. 2007 Vol 5 (2) 5.Cushman, R. Primer: Data Protection and the Personal Health Record. UM-Miller School of Medicine Project Health Design ELSI Team, University of Miami.
In passing the Health Information Technology for Economic and Clinical Health (HITECH) Act, which was part of the American Recovery and Reinvestment Act of 2009, Congress focused on the promotion of the “meaningful use” adaptation of electronic health records (EHRs), and on health information exchange (HIE).4,5 HITECH Act of 2009 made no mention of patient health records (PHR).4,5 In 2009 AHIMA, in “AHIMA Written and Oral Testimony at the NCVHs Privacy, Confidentiality & Security Subcommittee Hearing on Personal Health Records noted that there is a real concern for the viability of PHR, and its ability to take off and continue to strive in health care due to privacy, confidentiality and security concerns.4
- Whether patients should have the ability to modify professionally sourced data.3,4,6,7,8
The issue is one of a balance between the patient’s rights to privacy and confidentiality and the need of the providers for data integrity.1 This is a major concern with PHRs, and is one that is highly disputed. Some systems ,like Indivo, provide full privacy and security to the patient. The patient can completely control who can read, write or modify his or her records.5 In other systems, such as those used in the military health system's personal health record pilot with Microsoft HealthVault and Google Health, the issue is handled by assigning an administrative to make changes.8
- The ability of patients to withhold certain medical information from their providers (a privacy issue) may at times be in conflict with patient safety.8
The ability of patients to determine which medical information to share with their providers may result in the providers making clinical decisions based on incomplete information, potentially causing harm to patients. This may create a conflict between the patients need to control their information and their safety.8
- Should providers be able to withhold extremely sensitive information from PHR, or at the very least, institute a waiting period in reporting? 8
Should certain sensitive information, such as lab results related to sexually transmitted diseases findings, pregnancy results, and positive cancer findings, not be released into the PHR, and instead, be reported to the patient in person?</nowiki>Other challenges commonly associated with PHRs, include the following: Should the entire Problem List be shared? 3 Should the entire Medication and Allergy Lists be shared? 3 Should all laboratory and diagnostic test results be shared with the patient? 3,9 Should clinical notes be shared with the patient? 3 Should minors be able to have their own private PHR, and should patients be able to share access to their PHR via proxies? 3,10,11
Specialized Types of Personal Health Records
Oncology Survivorship Care Plans
One specialized form of PHRs is the Oncology Survivorship Care Plan. Survivorship Care Plans are used to assist cancer survivors in keeping track of data about their health that may affect off-therapy risk factors and screening. A Survivorship Care Plan includes information about the anti-cancer treatments a patient received, including chemotherapy, radiation and surgery, and his or her long-term needs based on the patient’s individual treatment history. This includes information about possible long-term side effects of the therapies, recommended follow-up appointments and testing, and sometimes guides on improving long-term health after cancer treatment.
A variety of organizations and hospitals have developed Survivorship Care Plans for patients to use. For example, the American Society of Clinical Oncology (ASCO) has developed a Survivorship Care Plan form that can be used as a guide. Survivorship Care Plans are typically developed using data from long-term follow-up guidelines written by cooperative oncology groups, such as the Children’s Oncology Group Long-Term Follow-up Guidelines. (Sharp, 2014) Some Survivorship Care Plans, such as Cancer SurvivorLink,[www.cancersurvivorlink.org] allow cancer survivors to not only to keep information about their treatment in one place, but also to share healthcare documents with the healthcare team. Most Survivorship Care Plans function as standalone PHRs. Data is usually manually entered based on what is in the patient’s medical record. However, oncology providers, especially those working in cancer survivorship clinics, will often assist patients in completing their Survivorship Care Plans to ensure that the data is complete and accurate.
Using these specialized PHRs could benefit all cancer survivors. Studies have shown that using a Survivorship Care Plan improves the long-term care that pediatric cancer survivors receive.(Oeffinger, 2011) This is especially important as patients often transition their care away from their initial oncology team after therapy and not all cancer treatment centers have survivorship clinics. Williamson et al. showed that young adult cancer survivors who transferred to seeing an adult physician used SurvivorLink twice as often as those who stayed with the same pediatric oncologist.(Williamson, 2017) This study highlights the benefits of PHRs in assisting patients when transferring to new health care providers, especially for patients such as cancer survivors who have complicated medical histories.
The Veterans Health Administration's (VHA) VistA information system has an application called My Health eVET which allows veterans to access their computerized patient record system (CPRS) through a secure network. Veterans must register in My Health eVet verifying documents which allow patient access from other networks. The patient can view laboratory results, upcoming appointments, medication refills and send a secure email message to any provider to address concerns.
The Indian Health Service personal health record is similar the VHA system. IHS electronic health record is also a Vista based application. Patient must register and verify their account at an IHS or Tribal facility. From their PHR they are able to see their patient information from any IHS or tribal facility. once registered the patients are able to access labs, vaccinations, request appointments, look at medications lists along with other functions. A patient may designate a surrogate to have access to their PHR. Enrollment of patients into PHR has been included in the meaningful use incentive program.Open Notes
- Halamka, J., Mandl, K., and Tang, P., Early Experiences with Personal Health Records J Am Med Assoc. 2008 Jan-Feb 15(1): 1-7
- Fowles, J., Kind, A., Craft, C., et al. Patients’ Interest in Reading Their Medical Record. Arch Intern Med. 2004 Vol 164, 793-800
see also: AHIMA e-HIM Personal Health Record Work Group. "The Role of the Personal Health Record in the EHR." Journal of AHIMA 76, no.7 (July-August 2005): 64A-D.
- The Personal Health Working Group Final Report. July 1, 2003. Markle Foundation. http://www.connectingforhealth.org/resources/final_phwg_report1.pdf
- Janice L. Clarke, Deborah C. Meiris. Electronic Personal Health Records Come of Age. American Journal of Medical Quality May/June 2006 vol. 21 no. 3 suppl 5S-15S. http://ajm.sagepub.com/content/21/3_suppl/5S.extract
- Tang PC, Ash JS, Bates DW, Overhage JM, Sands DZ. Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption. J Am Med Inform Assoc. 2006 Mar-Apr;13(2):121-6. Epub 2005 Dec 15. http://www.ncbi.nlm.nih.gov/pubmed/16357345
- What Should Your PHR Contain?. October 2003. The American Health Information Management Association (AHIMA). http://www.myphr.com/your_record/record_contents.asp
- Standard Specification for Relationship Between a Person (Consumer) and a Supplier of an Electronic Personal (Consumer) Health Record (Withdrawn 2014) http://www.astm.org/Standards/E2211.htm
- The Role of the Personal Health Record in the EHR October 2003. The American Health Information Management Association (AHIMA). http://library.ahima.org/xpedio/groups/public/documents/ahima/bok1_027539.hcsp
- The Role of the Personal Health Record in the EHR Appendix A: Attributes of the PHR. October 2003. The American Health Information Management Association (AHIMA). http://library.ahima.org/xpedio/groups/public/documents/ahima/bok1_027455.hcsp
- Taylor, H. and Leitman, R., Patient/Physician Online Communication: Many patients want it, would pay for it, and it would influence their choice of doctors and health plans. April 2002. Harris Interactive. 
- Why Start a PHR?. October 2003. The American Health Information Management Association (AHIMA). 
- Connecting Americans to Their Healthcare - Final Report of the Working Group on Policies for Electronic Information Sharing Between Doctors and Patients. July, 2004. Markle Foundation. 
- Continuity of Care Record. Foundation of e-Health Initiative. 
- Grossman JM, Zayas-Cabán T, Kemper N. Information gap: can health insurer personal health records meet patients’ and physicians’ needs? Hlth Aff 2009 Mar; 28(2):377–89.
- Markle Foundation. Connecting For Health. Achieving election connectivity in healthcare: a preliminary roadmap from the nation’s public and private-sector healthcare leaders. [Online]. 2004 Jul [cited 2011 May 28]; Available from: URL:
- Halamka JD, Mandlb KD, Tang PC. Perspectives on informatics viewpoint paper early experiences with personal health records. JAMIA 2008;15(1):1-7.
- Mon DT. American Health Information Management Association (AHIMA) written and oral testimony at the NCVHS Privacy, Confidentiality & Security Subcommittee Hearing on Personal Health Records. [Online]. 2009 May 20 [cited 2011 May 6]; [12 screens]. Available from: URL:
- Snyder EL, Meslar RW, Levin SJ, Phillips PT, Johnson Remotigue E, Vasich MB, et al, editors. Barbri bar review: real property. USA: Thomson; 2007.
- Simborg D. The limits of free speech: the PHR problem. JAMIA 2009 Mar;16(3):282–3.
- Do NV, Barnhill R, Heermann-Do KA, Salzman KL, Gimbel RW. The military health system's personal health record pilot with Microsoft HealthVault and Google Health. JAMIA 2011 Feb 2;18(2):118-24.
- Keren R, Muret-Wagstaff S, Goldmann DA, Mandl KD. Notifying emergency department patients of negative test results: pitfalls of passive communication. Pediatr Emerg Care 2003 Aug;19(4):226–30.
- Nugent CP, Miller K, Park T, Donahue S, Soni A, Nugent D et al. Living profiles: design of a health media platform for teens with special healthcare needs.J Biomed Informatics 2010 Oct 43(5)( 1):S9-S12.
- Cushman R, Froomkin AM, Cava A, Abril P, Goodman Kw. Ethical, legal and social issues for personal health records and applications, J Biomed Informatics 2010 Oct; 43(5)(1):S51-S
- Sharp LK, Carvalho P, Southward M, et al: Electronic Personal Health Records for Childhood Cancer Survivors: An Exploratory Study. J Adolesc Young Adult Oncol 3:117-122, 2014
- Oeffinger KC, Hudson MM, Mertens AC, et al: Increasing rates of breast cancer and cardiac surveillance among high-risk survivors of childhood Hodgkin lymphoma following a mailed, one-page survivorship care plan. Pediatr Blood Cancer 56:818-24, 2011
- Williamson RS, Cherven BO, Gilleland Marchak J, et al: Meaningful Use of an Electronic Personal Health Record (ePHR) among Pediatric Cancer Survivors. Appl Clin Inform 8:250-264, 2017
Section on Oncology Survivorship Care Plans Submitted by Tamara P. Miller