Patient access to general practice electronic health information and interaction with their health care team via patient portals

Patient access to general practice electronic health information and interaction with their health care team via patient portals

The Royal New Zealand College of General Practitioners VERSION 1.0 DECEMBER 2014 Patient access to general practice electronic health information and interaction with their health care team via patient portals Guidance for PHOs and general practices The Royal New Zealand College of General Practitioners Expert Advisory Group on Patient Portals

2 Patient Portal Expert Advisory Group Susan Wells (Chairperson) Karl Cole John Morgan Maree Munro Ashwin Patel Matthew Stokes Andrew Terris Jo Fitzpatrick Jeanette McKeogh – Project Sponsor Joanna Parry – Project Administrator

3 Preface Patient access to electronic health records – A consumer view Trust me, I’m a doctor. And we do. Doctors and nurses feature in the 2014 Readers Digest top ten most trusted professions in New Zealand and have been polling this way for many years. As the 2014 commentary states “we place our lives in their hands. We trust them because of their ‘degree of training and dedication to preserve our quality of life.’” This paper provides guidance for health practitioners as they introduce access to electronic information, and a new means of communication and interaction with health services, to their consumers via a patient portal.

It is timely to consider the impact of the introduction of a patient portal into a clearly important and trusted relationship for many New Zealanders. First, do no harm… The possible harms are outlined in this paper: concerns over privacy and security; the challenges of health literacy for a lay population; an increase in workload and demand on services for health practitioners; and the possibility of increasing disparities in health as New Zealanders who would most benefit are not able to access this new intervention. These are all legitimate concerns, some better founded than others and they are all able to be addressed to some degree.

Consumers trust their health practitioners to see to the IT and technical aspects of privacy and security. The safeguard from a consumer point of view will be found in the transparency of the system – a clear briefing on where their information is stored, its potential uses to deliver quality care for them and others like them, the ability to access their information at any time and most importantly, the ability to see who else has accessed their information. This latter provision is both the most contentious and the most important. It is not that consumers do not trust health practitioners.

They want to know who is on their care team and what role those people play. In fact, many consumers are staggered to discover that the ability to share information amongst health practitioners is not widely available. The Shared Care portal in Auckland has this facility and enquiries to date have sought information rather than express outrage or accusation. It is sad that the most publicised breaches of trust have been unauthorised access and use of consumer health information. This provision addresses that issue.

Consumer health literacy is important. The paper reinforces the need for appropriately complex medical terms to address clinical requirements. While that need remains, the much maligned Doctor Google is testament to the fact that people are hungry for health information. Dr Google has no quality controls and leads people down some very strange garden paths. The opportunity provided by a patient portal is to link consumers to trusted sites and reliable consumer health information - which is personally relevant to them and their health. This is likely to increase the quality of health care relationships.

Consumers are aware of the pressures and limitations on their health practitioners. They commonly express concerns about ‘wasting the doctor’s time’ or ‘not wanting to bother the doctor’. Consumers are keenly aware of the time limits imposed on consultation times in primary care. A patient portal

4 encourages the development of a partnership approach. Consumers can follow up and prepare for consultations or gain a greater understanding of their medications, using accurately recorded information rather than relying on memory and impressions of a doctor’s visit.

The digital divide is real but decreasing. Recent data (2012) reveals 80% of New Zealand households have access to the internet and there are 4.9 million mobile phones for a population of 4.43 million. (Statistics NZ 2012.) New Zealanders now own more mobile phones than there are people and ownership crosses all population groups. Clearly part of the solution is to ensure access using mobile technology.

The paper does not deal with the harms of NOT offering a patient portal to health consumers – the harms of ‘business as usual.’ Most health consumers and particularly those with long term conditions and/or heavy users of health services have patient stories on ‘business as usual.’ For many consumers, business as usual is:  Old fashioned – appointments need to be made during business hours.  Inconvenient– the need to attend appointments during business hours.  Disrespectful– waiting times are longer than appointment times.  Demanding – prescription refills are a chore, problems need to fill a short time frame.

 Tedious – covering the same information with a number of health practitioners or service providers.

 Compartmentalised – dealing with health problems and bits of body not all of me.  Uncoordinated – multiple appointments for different symptoms with the same cause.  Inefficient – the ‘right hand not knowing what the left hand is doing.’  Mysterious – uncertainty about what the pink pills are actually treating, what the doctor meant.  Dangerous – missed or clumsy connections transferring across services. Many health practitioners also share these frustrations. While patient access to electronic information and interaction with health care services via patient portals can’t address them all, they do have the potential to change the face of primary health care and bring consumers and their doctors closer together.

As a New Zealander, my vision is to see doctors in the top three most trusted professions. This paper is a pathway to a better future for us all. A future which is in your hands – uptake of a patient portal is most strongly influenced by a trusted health professional who simply offers them the opportunity to connect and be informed via this medium. The possibilities are great and the journey will be taken in small steps. The first step is for you to offer me access to a patient portal. I trust you will have the courage to do that. Jo Fitzpatrick

5 Contents Contents Preface .

. 3 Introduction . . 7 What is the status quo . . 7 What is a patient portal . . 7 Aims of this document . . 8 Scope . . 8 Methods . . 8 Potential benefits and risks of patient portals . . 9 Evidence for patient and provider benefits and risks . . 10 Impact on patient-provider partnership . . 10 Health impacts of portals on patients . . 11 Work impact of portals for providers . . 11 Disparities of adoption . . 12 Getting ready for patients to access medical records . . 13 PHO strategies to support portal implementation . . 13 Health information availability . . 14 Privacy, confidentiality and security of health information .

. 15 Significant privacy impacts of patient portals – a guide for practices . . 15 Rule 1. Purpose of collection of health information . . 16 Rule 2. Collection from the source of health information . . 16 Rule 3. Collection of health information from the individual . . 17 Rule 4. Manner of collection of health information . . 17 Rule 5. Storage and security of health information . . 17 Rule 6. Right of access . . 19 Rule 7. Correction of health information . . 19 Rule 8. Accuracy of health information-check before use . . 20 Rule 9. Retention of medical records . . 20 Rule10. Limits on use of health information .

. 20 Rule 11. Limits on disclosure . . 22 Rule 12: Unique identifiers . . 22

6 Common issues to be addressed . . 22 Security, registration and authentication . . 22 Informing patients of implications of record access . . 23 Patient sharing record with someone else . . 24 Correction of record-accuracy of record . . 24 Patients contributing to record . . 25 Writing clinical notes . . 25 Laboratory results . . 26 Online communication . . 26 Third party data or other data that the health professional wishes to remain confidential . . 27 Children . . 28 References . . 29

7 Introduction Many consumers have considerable experience with online transactions including shopping, banking, travel reservations and even higher education.

However, health care services have been slow to embrace the opportunities afforded by the internet and electronic media to enable people to look after their health in a similar way. Over the last decade, new technologies have been developed to allow patients to view their medical records via secure internet portals. These patient portals have been advocated as a path towards improving the quality and safety of health services. They promote patient engagement in their own care, allow patients to be well-informed of their health care needs and facilitate a more collaborative partnership with their health care team.1,2 The National Health Information Technology (HIT) plan includes the concepts of three portals; a self- care portal, a maternity portal and shared care portal for patients with complex chronic disease.3 The plan has an aspirational goal that by the end of 2014: “New Zealanders will have a core set of personal health information available electronically to them and their treatment providers regardless of the setting as they access health services.” 4 What is the status quo? Patient access to their own health records is a fundamental patient right enacted in the Privacy Act 1993 and Health Information Privacy Code 1994.

A patient who requests their health information is given access within 20 working days usually without charge, and in a form that the individual prefers.5 However, as these records have been paper-based or ‘locked up’ within health services’ electronic health record (EHR) systems, patient access has been relatively uncommon due to logistic and structural barriers.

What is a patient portal? Given confusion around the term, we use the same definition from Wikipedia as provided in a recent review of patient portals that have been developed in conjunction with New Zealand GP patient management systems:6 “Patient Portals are health care related online applications that allow patients to interact and communicate with their health care providers, such as physicians and hospitals. Typically, portal services are available on the Internet at all hours of the day and night. Some patient portal applications exist as standalone websites and sell their services to health care providers.

Other portal applications are integrated into the existing website of a health care provider. Still others are modules added onto an existing electronic medical record (EMR) system or PMS. What all of these services share is the ability of patients to interact with their medical information via the Internet. Currently, the lines between an EMR, a personal health record, and a patient portal are blurring.” As highlighted in this definition, patient portals are an evolving intervention that allows a patient to interact with their health information and their health care team via the internet.

There is a variety of ways a portal can be implemented and the extent of health service data that they have available.

You can also read