Health Care Consumers, Security and Electronic Health Records

• Abstract
• Introduction
• Consumers
• Consumer Concerns
• Security of EHRs
• Research in New Zealand
• Conclusion
• References

Abstract
Health care has entered the electronic era. This era has improved data collection and storage facilities while allowing almost instantaneous access to and results from data queries. Furthermore, it allows direct communication between health care providers and health care consumers. The development of privacy, confidentiality and security principles are necessary to protect consumers’ interests against inappropriate access to their health data. Electronic health IT system vendors have dominated the transition from paper-based to electronic information systems, claiming the change will improve the quality and coherence of the care process. However, numerous studies show that health consumers are the important stakeholders in this process and their views currently are that a shift to the electronic medium is desirable, but not just yet. Against the background of the international push towards the continued development of Electronic Health Records (EHRs), by the Health and Human Services (US), National Health Service (UK), Health Canada (Canada) and more recently the Ministry of Health (New Zealand), this paper presents the consumers’ role with a focus on their perceptions of the security of EHRs. The paper includes a description of and initial results from a national New Zealand study being undertaken by the authors of this paper to find out more about New Zealand health consumers perceptions of EHRs and any possible security problems with EHRs.

Introduction
In health care, the doctor–patient relationship is bound by trust, a trust that stems from a clause in the Hippocratic Oath:

All that may come to my knowledge in the exercise of my profession or in daily commerce with men, which ought not to be spread abroad, I will keep secret and will never reveal.[ 1 ]

As health care enters the electronic era, the doctor–patient relationship is changing. Patients are being referred to as consumers. These changes have triggered a gradual transfer of some responsibility from doctors to consumers. Consumers are now playing a greater role in their own health care than in the past.^{[ 2 ]}

One result of these changes, combined with the desire to improve the efficiency and effectiveness of the health system, is the Electronic Health Record (EHR). Pyper et al^{[ 3 ]} regard EHRs as a longitudinal record of each consumer’s health care that the consumer can access. Ultimately, the purpose of the EHR is to contain all consumer health information from "the cradle to the grave".^{[ 4 ]}

In New Zealand, the majority of health care records still exist as paper records. This is despite the fact that a large majority of primary care practices have some form of electronic system.^{[ 3 ]} New Zealand is regarded as a leader in the field of merging information technology and health information.^{[ 5 ]} Despite this, clinicians still tend to keep their own records, which has resulted in fragmentation of an individual’s health history and only incomplete information about their current needs available when they visit different clinicians. Clinicians only record information that is specific to their own treatment of the individual, without having access to, and contributing in turn to, a "full health picture".

Increasingly, the potential for EHRs to improve the efficiency, safety and quality of health care over paper-based systems is being recognised across the health care sector.^{[ 6 ]}  A major goal for the health care sector is achieving "seamless delivery of care", particularly for the elderly, chronically ill and others with complex needs, and this requires improvements in information exchange between health service providers.^{[ 7 ]} 

According to Gillies and Holt,^{[ 6 ]} EHRs’ ability to store and retrieve information while allowing one to perform interactive and customised queries is a major advantage of their use. Use of EHRs would also allow consumers to interact with their medical records. Currently, consumers have little or no interaction with their records. Not many health consumers in New Zealand are aware of their right to see and comment on items in their record as legislated by the Health Information Privacy Code 1994.^{[ 5 ]} According to the Institute of Medicine,^{[ 8 ]} up to 98,000 people in the US die every year from medical errors resulting from incomplete or incorrect health records. With a correctly monitored EHR system and more consumer interaction, the number of medical errors could be reduced by up to 90 percent.^{[ 9 ]}

Therefore, EHRs can provide a powerful tool to link the isolated fragments of consumers’ health information that currently exist within disparate services. They also allow providers immediate access to essential clinical data. Integrated EHRs would potentially provide consumers with the capacity to provide essential information about their health care to the providers of their choice, anytime, anywhere.

The implementation of EHRs is not a case of "if it will happen", rather, it is a question of "how long till it is completed"? The US president, George W Bush, has announced that he wants most Americans to have an EHR by 2014 and has allocated a capital budget of US$100 million to fund pilot projects to ensure early progress does happen.^[10]  The UK has set aside £2.3 billion to ensure 50 million patient records are digitised by 2010.^[11]  In these countries, the foundations have been laid for fast uptake of EHRs.

In New Zealand there has been a shift towards this electronic medium. Didham et al^[12] found that almost 90 percent of general practices in New Zealand have some sort of electronic patient management system (PMS). This high adoption rate, the existence of the unique National Health Index (NHI) number, and the existence of the Health Intranet^{[ a ]} and HealthLink^{[ b ]} systems indicate that the infrastructure to support the building of a complete EHR system is already available. However, New Zealand health consumers do not feature strongly in the current systems. The Ministry of Health in their Health Information Strategy for New Zealand 2005 ^{[ 5 ]} recognised the importance of involving consumers and has also identified the security concerns associated with the development of a complete EHR. The purpose of this review is, thus, to look at consumers and their view in relation to the development and use of EHR. It is also important to consider the security concerns that exist.

The literature suggests that the advantages of EHRs far outweigh the disadvantages.^[2,3,4,6] However, even though both government and the health care industry advocate the move to the electronic media in New Zealand, not enough attention has been given to consumers.

Consumers
Traditionally, health care consumers have been the "least consumer-like" and the least informed stakeholder when compared with consumers in other industries.^{[ 7 ]} For example, consumers in the banking sector have been integrated into the banking sector at all levels, to ensure that banks provide services that are customisable to each and every consumer. Health care consumers were the least informed because it was felt by health care providers that limiting consumers’ knowledge about their conditions would reduce the risk of social stigma and might prevent patients getting "sicker" once they knew more about their medical condition.

As populations expanded and epidemics increased, medicine became more scientific and, thus, medical knowledge started becoming available to the lay public.^{[ 7 ]} In the last 20 years the goal of health care has expanded from cure of health conditions to include prevention, with an emphasis on supporting health and wellness.^[13] Further, the advent of the Internet has put evidence-based treatment into the public domain.^[14] According to Amatayakul, "Patients have become interested in making choices for themselves about their physicians, treatments and lifestyles" (p 54).^{[ 7 ]} This can be clearly observed, for example, in the change of terminology from "medical care" to the more recent "health care".^{[ 7 ]} The term medical care focused primarily on processes administered by a physician, whereas health care encompasses a broader range of services and procedures including a personal responsibility for "wellness" and various holistic approaches to wellbeing.^{[15 ]}

The emergence of modern communication technology and the drivers for the health sector to include consumers in its activities, for example the Primary Health Strategy in New Zealand, are just some of the factors behind the increasing importance of consumers in the health care setting.^{[15 ]}. The biggest factor in cementing the role of patients as consumers, however, is the growth and the innovative capabilities of technology and the consequent importance that is placed on informed consent.

The increasing availability of interactive information systems has enabled many services to have an online presence that provides services, rather than simply offering static information. Health information is now only a mouse click away, with many Internet users visiting websites that contain health information and treatment options. The growth of discussion boards and bulletin boards has also allowed individuals to share experiences about specific diseases and their treatments.^{[16 ]}. This has introduced another dimension into the healthcare industry; consumers are now more knowledgeable and understand the terminology and procedures that are used in the health sector. According to Eysenbach,^[17] the technology initially had been developed from the perspective of the medical professional. However, with the drive towards consumerism this has changed resulting in the birth of consumer health informatics. Consumer health informatics is defined by Eysenbach as: ^[17]

the branch of medical informatics that analyses consumers’ needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers’ preferences into medical information systems." (p 1713)

This definition agrees with Amatayakul’s^{[ 7 ]} statement that the "principle of consumer health informatics is that of empowering individuals to play a greater role in their own health care and to be active participants in the decisions that affect their health care." (p 61–62) The aim is to empower consumers to be a part of their own treatment plan rather than feel like a passive recipient of medical treatment.

Another element that has influenced the move towards a consumer-based approach has been the change in the way patients pay for their health services. In earliest times, health care services were bartered like a normal commodity from healers. Patients became less like consumers as the payment for their health services changed. The initial idea was for patients to pay for the services themselves, however with the establishment of Medical Aid and Medical Insurance Companies this changed. The aim of Medical Aid or Medical Insurance Companies is to act as a third party payment scheme that offers the patient the choice of either following public or private health schemes.^{[ 7 ]}. By contributing a specified amount to these companies every month, patients perceive a sense of financial security in the case of either serious injury or chronic illness. When the third parties became key players in the health sector, patients lost their consumer identity totally as they did not directly purchase health care services. However, with the shift towards managed health care and health plans, patients have to pay for more to get more choices.^{[ 7 ]} Thus, they have ceased being simply patients, and have shifted into more of a consumer role, demanding more information about their health care providers, diseases and treatments.

Consumers can only be fully empowered when they are allowed to be full participants in the health care system. This would mean interactions with health care professionals where consumers do not receive just limited feedback, but one that promotes multi-way feedback, so that all parties benefit. This idea has been adopted by the European Union, which realised that the greatest interaction would occur if patients had access to their own records.^[17]. In October 1998, the European Union required that each of the member countries pass legislation that would ensure consumers in those countries had access to all their health records.^[17].

Correctly monitoring an EHR system together with increased consumer interaction would reduce the chances of medical errors going unnoticed. As noted by the Institute of Medicine,^[8] a large percentage of deaths are caused by wrong medication, illegible handwriting and improper procedures. An EHR system would limit the chances of any one of these mistakes, as the record will be viewed by the consumer who could question anything that is stated there. Building decision support systems into the EHR will also limit the chances of incorrect medications and can alert the record user to any harmful potential medical interactions. Government recognition of the need for patients to become key stakeholders of their own good health provides the perfect opportunity for a push towards the implementation of the EHR. On the other hand, many barriers would still remain; a main one being the concern consumers have regarding the security of information held in EHRs.^[18]

Consumer Concerns
Consumers’ fear is driven by the nature of the information that is stored in their health records. It is regarded as being private, and even more so, if that were possible, when it contains information regarding mental health or sexually-related medical conditions.^[21] Unauthorised access to such information has already resulted in a number of publicised examples.

• Doctors in Australia selling their patients’ medical records to marketing firms. The doctors in this case claimed they were allowed to give out the information as long as there was no information in the record that could lead to the identity of an individual patient. However, it can be argued that by simply recognising the medical conditions in the records it was very easy to identify the patient.^[22]
• A public health worker in Florida, US, who had access to the names of HIV patients that were in his care, released them to the press. A total of 4,000 names were released and printed in newspapers.^[23]
• A computer hacker who accessed a GP’s database and used the information to carry out more heinous crimes. The hacker would telephone potential victims and identify himself as a doctor, which would be verified by the detailed family medical history he would give out. He targeted young women whose confidence he could win easily, and would proceed to carry out sexual crimes.^[25]

Another concern is the risk of internal hackers: people within a health organisation who might break into records and obtain information that is not health related. This information might then be used in commercial or criminal ways.^[26]

Such cases and potential risks as have been listed above indicate that there is a legitimate reason for consumers to be concerned.

Privacy is the main concern that health consumers have about any record system. In 1995, the Louis Harris Poll found that 100 percent of Americans surveyed saw the benefits of having their health records computerised. However, 74 percent expressed concern about the negative possible negative consequences associated with the use of a computer-based system. Their concerns were based on the following points: ^[18]

1. Their own lack of understanding of the dynamics of information gathering.
2. Fear of having a lack of control over the use of their personal information.
3. Not understanding the privacy protection laws and regulations that do (and do not) exist.
4. Fear of errors, carelessness and poor judgement by those who may handle their personal information.

These concerns stemmed from surveys of consumers with previous experience with computerised systems. More recently, the 2005 Harris Interactive Survey found that 48 percent of American adults now claim the benefits to patients and their well being outweigh any risks to privacy.^[27] Nevertheless, almost 70 percent of these individuals were worried that sensitive health information might leak due to weak data security. According to this survey, the order of the concerns is now:^[27]

1. Sharing of medical information without a consumer’s knowledge.
2. The use of computers contributing to an increase in medical errors rather than a decrease
3. Reduction of any existing privacy rules.
4. Consumers not revealing all necessary information to their health care provider because of a fear of having their details being made available electronically.

In another survey conducted in September 2005 it was found that 72 percent of Americans surveyed supported the idea of a national network for health information, yet 79 percent of them still raised security and privacy as being their major concerns.^[28] British consumers surveyed by the NHS also believed EHRs would be a good way to store health records. However, like their American counterparts, the British public also felt that security and privacy of their information would be a major concern.^[29].

New Zealand health consumers appear to be following the same trends, however, there have not been many national studies conducted to discover New Zealand consumers’ perceptions. A focus group study carried out by Ryan and Boustead in Dunedin in 2004 found that the issue of the security of an EHR database was the main reason it had low public support. The study, which was only conducted on a group of 20 people, also found that the misuse of information and its disclosure to people other than health professionals was a major concern within the group.^[30] This finding was in line with those from the US and the UK. The issues that were identified by Ryan and Boustead^[30] were categorised as:

1. Lack of confidence in the privacy and security measures taken when creating or sharing records;
2. The security aspects of control of consumers’ data; and
3. The risks that individuals who use the record may face, for example, not fully understanding what the record means and, thus, making incorrect conclusions.

All these concerns stem from a lack of understanding of the various security measures that do exist, which would make an EHR system secure. Informing health consumers about firewalls, encryption, audit trails and anti-virus software to health consumers would assist to reduce these feelings of fear. And, by informing health consumers that their EHR would be equipped with the five key security requirements, their fears would be further allayed. These security features would ensure authentication, access control, accountability, authorisation and availability. Maintained at high levels these functions would ensure that all data would be kept confidential and their integrity maintained.

Security of EHRs
Concerns about the security of patient data are not new. They have existed from the dawn of medical history and are still a major concern in modern times. The Hippocratic Oath is founded on the principle of confidentiality which has become a time honoured practice in medical ethics. The Irish Government in its statement on access to medical records requires that patient records, both paper and electronic, are safeguarded to ensure the privacy and confidentiality of patient.^[19] Preserving the confidentiality of patient information is of vital importance; confidentiality gives rise to trust. The health sector is founded on trust and, thus, looking at the security concerns that EHRs pose is imperative (see the New Zealand Health Information Privacy Code 1994).

Security of health records primarily encompasses privacy and confidentiality. These were significant issues with paper-based records.^[7] One of the functional disadvantages of a paper-based records system can be also seen as an advantage: its sheer volume when stored makes it difficult for someone to access a large number of records. However, this difficulty would disappear with an EHR-based system. With centralised and distributed databases and linkages between the various electronic systems containing consumers’ information, the chances of an unauthorised person gaining access to large volumes of patient information increases significantly. Silverman^{[ 20]} acknowledges this problem when he says, "Unauthorised access to paper records was always feasible, but the computer takes a small problem and has the potential to magnify it enormously." (p 29).

Health information and the safety of health information can be compared with the storage of bank information. The introduction of Automatic Teller Machines (ATMs) in the early 1970s was accompanied by numerous arguments and prejudices against such technology. The primary concern was focused on levels of security. However, in 2004, Anguelov et al^[31] showed that consumers in the banking sector have recognised that the automated banking systems actually restricted access. They also noted that consumers felt more at ease knowing that their banking information was not written on pieces of paper that could potentially be left lying on clerks’ desks for anybody to read. Even though ATMs have been integrated into society because of their ease and convenience, the same cannot be said of e-banking. A 2003 study by the Public Interest Advocacy Centre showed that only 33% of Canadians do their banking online.^[32] This was found to be because ofconcerns regarding security. An extract from a table by Anguelov et al^[31] indicates that, in 2003, comparatively more people than in 1999 believed that their money was safe using e-banking, but nonetheless there was still a significant concern regarding privacy. The table below shows these findings which were taken in two consumer studies, one in 1999 and the other in 2003. The table shows that fewer than one-half of the respondents in both years felt comfortable in providing personal information through electronic systems. This indicates that even though Schnieder (1997) asks "why can’ t health care use the technologies that already have been developed for secure electronic commerce by such transaction powerhouses as Visa, MasterCard, IBM, RSA Data Security and HP?" (p1), ^[33] it is not the technology that is the problem, but rather the requirement for consumers to change their perception.

Table: Consumers perceptions of security in e-banking, 1999 and 2003 (adapted from Anguelov et al. 2004 ^[31] )

Perception	Percentage who agree or strongly agree
Security and privacy	1999	2003
When I use e-banking, my money is as safe as when I use other banking services	49	55
Mistakes with e-banking are more difficult to get corrected than with regular banking	50	49
Mistakes are more likely to occur with e-banking than with regular banking	41	36
I feel comfortable providing my personal information through an electronic banking system	35	41
I worry about the privacy of my information when using the electronic banking system	NA	63
I worry that the electronic banking systems are not secure enough to protect my personal financial information	NA	52
I worry that the electronic banking systems are not secure enough and I could lose my money	NA	40

Thus, before technology can be fully integrated into health care, consumers need to feel secure about the confidentiality of their EHR in the same way they grew to be confident in the workings of ATMs. Rules and regulations have been passed in the banking industry that ensure the security, privacy and confidentiality of information, thus helping consumers feel more at ease with accepting these technologies.

Research in New Zealand
Currently, a study is being undertaken by the authors of this paper to find out more about New Zealand health consumers perceptions of EHRs and, more specifically, their feelings about any possible security problems with EHRs. Unlike the 2004 Dunedin study, this new study will be national. Thus, it will be clearly identified if there is a common trend in perceptions about EHRs in New Zealand and whether that trend is the same as, or different to, the trends that have been documented in the overseas studies cited above. The adoption of an EHR type system (Health Intranet and HealthLink) in New Zealand has found a high acceptance within healthcare providers, however, it is now imperative to bring the health consumer on board and include them as part of the health care team.

Preliminary results of our study indicate that New Zealand health consumers are concerned about the security of their records. However, when the various security measures available are explained, a large majority then feel that with these measures correctly in place, their electronic records would be secure. Some participants have commented that with the correct security measures they would find EHRs a great asset in their health care. Despite a number of positive comments, comments such as, "there could be all sorts of reasons for electronic data to go down, natural disasters or terrorism", indicate that there is still a large proportion of health consumers that is afraid of electronic developments. The fear that many health consumers have may be due to a lack of understanding of the security measures that are available. If consumers are educated about the strength of electronic security, they will feel more at ease with it, as demonstrated by our early findings.

Conclusion
This review indicates that the transition to a fully electronic health system based on the EHR is not just something that has been proposed in theory. It is now a reality: most first world countries are in the process of developing a fully integrated yet geographically distributed EHR. Clinicians and other members of health care teams are generally regarded as the key members of the treatment plan, but with the advent of the EHR there is a greater call for including the health consumer as well. It is important to realise and understand consumers’ perceptions, as it is only by understanding their perceptions that we can hope to introduce a system that will be acceptable to all those involved in providing the best treatment plan available. Concerns regarding privacy and confidentiality have been identified as barriers to total acceptance by the health consumer. However, by educating consumers about the available mechanisms and proving that they do provide a secure environment, this barrier should be overcome. With knowledge of authentication procedures, access control, audit trials, firewalls and encryption, consumers will find that storing their health information electronically will provide a number of benefits. By making it possible for them to access their own records, without any security concerns, consumers will be given the chance to take a proactive part in maintaining their own good health. Allaying health consumers’ fears is critical to ensuring that EHRs can become a global technology that conforms to strict standards. Failing to consider consumers in relation to EHR technology will result not only in a slow adoption of the technology but also the development of technologies that do not conform to a specific standard, which will have the roll back effect of further increasing health consumers fears.

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Footnotes

a.	The Health Intranet is a network designed and established to assist the delivery of integrated healthcare by connecting general practice and secondary care clinicians, while enabling access to administrative systems such as the New Zealand Health Information Service National Health Index (NHI). Established by the Ministry of Health in 1999.
b.	HealthLink was established in 1996 and is Australasia’s largest health information network. It connects general practice, hospitals, laboratories and other healthcare institutions, providing a secure and instant Electronic Data Interchange (EDI) system for structured clinical information.

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