Patients’ attitudes towards sharing their health information

https://doi.org/10.1016/j.ijmedinf.2005.08.009Get rights and content

Summary

Objectives

The current policies of the governments of Australia and New Zealand encourage the use of electronic information systems to exchange patient information between various stakeholders. This research investigated (1) the attitudes of patients toward sharing their medical information and (2) whether patients considered themselves to be well-informed about the uses that are made of their information.

Methods

A questionnaire survey of adult primary-care patients was conducted in five clinics within a medium sized New Zealand city. Outcome measures were the proportions of respondents willing to share different categories of their information with different classes of recipients. Patients’ evaluations of their knowledge about the uses made of their information were also collected.

Results

Over 200 responses were collected from five clinics. Respondents’ attitudes toward sharing their information were found to be influenced by three factors. (1) Identity of recipient: whilst respondents were generally willing to have their information shared between health professionals, they were increasingly unwilling for it to be distributed to other stakeholders, such as administrators, researchers or other government departments. (2) Level of anonymity: respondents were more prepared to share anonymous information. (3) Type of information: respondents were increasingly unwilling to share their information as it takes on a more personal nature. Respondents were also found to be very poorly informed about the use of their information, 90% of respondents indicated that they had either incomplete or no knowledge of how their information was shared and 79% had no knowledge of the uses of their National Health Index (NHI) number. The findings also indicate that respondents would prefer to be consulted about the distribution of their information.

Conclusions

These findings indicate that many respondents were unwilling to have their personal information distributed other than for purposes of clinical care and a sizeable proportion of the respondents would like to be consulted before their information is released. The high level of interest and concern that this research revealed among respondents, suggests that more attention should be directed towards ensuring that patients are fully informed about current information sharing practices. The findings also imply that the design and development of future systems should also incorporate sophisticated and flexible access control policies that can be adapted to meet the preferences of individual patients.

Introduction

The right to personal privacy is an important principle within many cultures [1]. However, the increasingly sophisticated use of information and communications technologies is constantly threatening to erode people's privacy [2]. Within the healthcare sector there is a need to constantly balance patients’ requirements for personal privacy against the potential benefits that may accrue to society as a whole from the more widespread use of their personal information. This issue is particularly relevant in developed countries which have been seeking to use information technology to improve both the quality of care provided for patients and organisational efficiency. Within Australia and New Zealand, two key strategic aims have been the introduction of electronic health records (EHR) systems and the enhancement of electronic communications links between the primary care sector and secondary care institutions [3], [4], [5], [6]. These aims are similar to the strategy of the UK Department of Health [7]. Part of the New Zealand strategy includes expanding the use of the National Health Identifier number (NHI) [8]. Initially, the NHI was developed for use as a unique identifier for all patients entering the secondary care system, but the intention is to extend its use into primary care.

Whilst studies have shown that EHRs do increase the accuracy and accessibility of patients’ records, the potential threats to the confidentiality of the information that they contain and their implications for patient privacy are more controversial [9] and large scale health information systems have often been fraught with problems [10], [11]. A classic example of this occurred within the British National Health Service when doctors boycotted an inter-organisational network designed to improve the exchange of information on the grounds that it threatened patients’ privacy [12], [13]. Research in New Zealand into clinicians’ attitudes towards the use of information contained within EHRs indicated that some of the potential uses were unacceptable and would also lead them to withhold information [14]. These concerns are not unfounded, for example, Anderson [15] cites a number of cases where patient privacy has been breached in the USA and, in a survey of Australians, Mulligan [16] found that 1.9% of respondents reported harm arising from unauthorised disclosure of their information by health services.

From the patient's perspective, confidentiality is essential to the patient–physician relationship. Unless a patient can be sure that personal information will not be distributed against their wishes, they may be reluctant to disclose sensitive information that may be crucial to their correct treatment [17] or they may refrain from seeking treatment [18]. However, there is a lack of research from the patients’ perspective. A recent review of the literature [18] identified nearly 6000 articles related to issues of patient privacy, but the vast majority of them were written from the practitioners perspective or addressed legal or regulatory issues. Only 6% of the identified articles were written from the patients’ perspective and of these only 110 (2%) were based on research. Furthermore, most of this research focussed on specific groups or particularly sensitive issues, such as adolescents who are concerned about their information reaching their parents or people who are having HIV tests; very little work has addressed the attitudes of ordinary patients.

Some research into attitudes of patients or the public towards the distribution of their information has been undertaken in the UK in association with the National Health Service's Electronic Record Development and Implementation Programme (ERDIP) [19], such as the Patient Electronic Record: Information and Consent (PERIC) project [20] and the ‘Share with Care’ project [21]. In Australia, the issues of confidentiality of patient information and consent for access has been addressed as part of the HealthConnect project [22], [23]. These projects have recognised the increasing levels of concern about personal privacy among the general public and have started to address the issues of consent for access to patient information and to explore the development of electronic systems to control access (e-Consent systems) [24], [25]. However, the exploration of the attitudes of patients has not received the attention that it would seem to warrant.

New Zealand has a very high level of computerisation in primary care [26], and the strategies proposed by the government will lead to a significant increase in the amount of personal health information which will be transferred between various organisations. The research reported in this paper explores the attitudes of New Zealanders towards sharing their personal health information. This knowledge is needed to ensure that the design of future health information systems will be acceptable to patients.

This paper focuses on five issues:

  • whether patients’ attitudes to sharing information differ depending on the recipient;

  • whether patients’ attitudes to sharing information differ depending on whether the information is identifiable or non-identifiable;

  • whether patients’ attitudes to sharing information differ depending on the type of information;

  • the extent to which patients would like to be consulted about the distribution of their information;

  • how well New Zealanders are informed about how their health information is used.

Section snippets

Methods

The patients’ perceived knowledge of information sharing practices and their attitude towards the distribution of their personal health information to various classes of people or organizations was assessed using a short questionnaire which was designed to take approximately 10 min to complete. A condensed version of the questionnaire is shown in Appendix A.

The questionnaires were distributed by the receptionists in five clinics serving primary care patients.1

Response rates

A total of 203 questionnaires were returned out of the 263 which were distributed, giving an overall response rate of 77%, which was similar for all clinics. However, not all patients who visited the clinics during the sample period were offered questionnaires and some patients did not accept them, which means that the response rate as a percentage of people visiting the clinics during the data collection period is unknown.

Some of the questionnaires were returned without being fully completed,

Discussion

Because respondents self-selected, the sample may not be representative of the general population, however, it is not clear how this may have affected the findings. Younger female patients are over-represented and there remain some groups with only a very small representation in the sample, such as older people in the 60+ age group or Asian and Pacific Island populations. Furthermore, since all of the clinics were located in an urban area, the results may not represent the views of a more rural

Conclusions

In conclusion, these results indicate that many respondents would like limitations to be placed on the distribution of their personal information particularly for purposes other than clinical care. However, respondents’ views vary widely and are influenced by several factors, this implies that it will be difficult to define a simple protocol for sharing information which can achieve widespread acceptance. This paper proposes a hybrid model of consent in which the way in which consent is

Acknowledgements

This research was funded by the Massey University Research Fund.

The authors would like to thank the staff and patients of the clinics who contributed to this study, the local Iwi Council of Elders, Te Mauri O Rangitaane O Manawatu for their support and advice and the anonymous reviewers for their useful comments which helped to improve this article.

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