Patient Health Records Online

Claudia Pagliari

Claudia Pagliari

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Greater transparency and sharing of information can also improve communication, trust and shared-decision making between patients and doctors.

1. How will the Personal Health Record help the Patient to control his /her data?

This depends on the type of Personal Health Record system. Some are entirely patient-controlled and are designed to help the individual generate and manage their own health records (e.g. symptoms, non-prescribed treatments, contacts) and copies of records generated by their healthcare providers (e.g. letters, test results, treatment plans). These may use home computing software or online applications. Other PHR simply provide patients with access to their provider's electronic health record via download, waiting room kiosk or the internet. Increasingly PHR systems are becoming more interactive; harnessing the benefits of user-generated and provider-generated content, access to online health information, and patient-provider messaging such as test ordering, appointment booking, reminders and online consultations. Web-based PHR have the advantage of enabling the patient to view and manage their records from anywhere with an internet connection and there is growing interest in the use of mobile telephony as a convenient delivery medium.

2. How will PHRs affect the doctor-patient relationship?

The issue of electronic health records often attracts public concern about the privacy and security of personal data. However emerging research indicates that giving patients access to their records can improve trust in doctors and healthcare organizations by increasing transparency and enabling the individual to question the data that are held about them. PHR also provide opportunities for patients to organize their own records and thoughts about their illness patterns, which can aid communication and shared decision making during the consultation. At the same time, integrated PHR systems that enable online appointment booking or results collection can enhance patient convenience and satisfaction.

3. Is allowing patients' access to their medical records safe?

So far there have been no reported breaches of patient safety as a result of giving patients access to their electronic health records, although there have been reports of patients being upset by what they have read. In contrast, there is some evidence that giving patients access to their health records can help to reduce risk by identifying errors. The risks of records that are generated and controlled by the patient are unclear. In principle this should increase safety; for example through reminding patients of their therapy plan or appointments or, where clinician-access is enabled, through tracking the use of non-prescribed treatments. PHR also create risks for privacy and the potential misuse of personal data by third parties such as insurance companies. However it is likely that patients will trade these potential risks against the clinical and personal benefits of on-line access, just as they are doing with on-line banking and e-commerce.

4. What are the benefits of making Personal Health Records available online?

Personal Health Records can help to empower patients by giving them greater access to and control of their medical records as well as enabling them to develop and manage records of their own. This can motivate improvements in self-care and treatment compliance and has potential to improve clinical outcomes, particularly in patients with long term illnesses requiring regular maintenance and review. PHR may increase patient safety through exposing diagnostic or drug errors, recording non-prescribed medicines or treatments, or increasing the accessibility of test results or drug alerts. They may also help to improve the continuity and efficiency of care by acting as the point of integration for records from multiple providers. This may be particularly valuable in emergency settings, where access to a patient's record can be vital for ensuring optimum treatment in minimum time. Greater transparency and sharing of information can also improve communication, trust and shared-decision making between patients and doctors. While some evidence of these benefits has begun to emerge, further research is needed.

5. How will this affect the current healthcare scenario where doctors are not sharing patient information, especially in developing countries?

Most western nations have seen a marked shift in attitudes towards the roles of doctors and patients over the last 10-15 years, accompanied by a move from the traditional paternalistic model of healthcare to a more patient-centred and collaborative one. This reflects wider societal trends towards consumer empowerment, which encompass greater freedom of information and flexible services. Personal Health Records are entirely consistent with these trends, offering the promise of convenient access to one's own data, the right to critically evaluate this information, and the opportunity to become a partner in the healthcare process. In developing countries much patient care remains at the paternalistic end of the spectrum, increasing the potential of PHR to become a transformative technology by balancing the power differential between consumers and providers of healthcare. While variable access to online PHR could increase the digital health divide, two factors offer hope that this will not be the case. Firstly, PHRs are becoming available in multiple formats, including via mobile phone and wireless internet, and access to such services may be good even in areas where other technological infrastructure is underdeveloped. Secondly, early evidence from the USA indicates that the most economically disadvantaged groups may derive the greatest benefits from such technologies, which can ameliorate limitations in access to healthcare through supporting health self-management and offering cheaper opportunities for remote care. PHRs also have the potential to increase the globalisation of healthcare; for example by enabling migratory workers to maintain access to their records and their healthcare providers via the internet; while multifunctional and interactive PHR also offer opportunities for the purchase of cheaper or higher-quality care from providers in other parts of the world.

6. How have the healthcare IT companies responded to this?

Personal Health Records technology is a commercial growth area. In the United States and Europe major private healthcare organizations have come to recognise the potential value of PHR for improving customer satisfaction and loyalty, and as a mechanism for reducing costs (e.g. through fewer insurance claims) and raising revenue (e.g. through online consulting). This has lead to the growth in online, interactive PHR systems, such as Kaiser Permanente's Health Online. Other commercial providers have stepped in to develop portable record management tools, such as the MedicAlert E-HealthKey which stores multiple records that can be viewed by an emergency healthcare team with the relevant software, as well as by the patient themselves using a home computer. In the United Kingdom commercial operators are offering patients access to their primary care record via USB smartcard and waiting room kiosks, as well as via the internet. It is unclear how this market will be influenced by the development of free online PHR systems, such as HealthSpace in the UK and iHealthRecord in the USA, although the differing needs of healthcare consumers will undoubtedly create multiple product niches.