How and why Australians access health information and perceptions of the usage and storage of person

How and why Australians access health information and perceptions of the usage and storage of personal health data

Research lead: Dr Steve Milanese, UniSA

Australian society is facing a developing health literacy challenge. Whilst Australians are continually encouraged to take control of their health, through taking an active role in their own health care decisions and making ‘healthy’ lifestyle choices, the increasingly complex nature of the Australian health care system, along with access to often-conflicting information sources, presents a conundrum for most Australians. As Australians live longer, with the associated rise in chronic disease prevalence, and Governments seek to rationalise resources allocation to the health system, health literacy becomes an increasingly important consideration.

Health literacy relates to a person’s knowledge, motivation and competences to access, understand, appraise and apply health information in order to make judgements and take decisions in everyday life concerning health care, disease prevention and health promotion to maintain or improve quality of life (European Health Literacy Consortium 2012). Poor health literacy competencies amongst patients have been shown to result in less healthy choices, riskier behaviour, poorer health, less self-management and more hospitalization, leading to an increased burden on the health care system.

An important influence on health literacy is the information that the patient can access. In Australia health information can come from many sources in many different forms. With the increasing use of electronic resources the pool of information from which a patient can draw their knowledge is exponentially rising.  However not all of this information is trustworthy.

Whilst research on health literacy has generally focussed on health literacy from the patient’s perspective, issues related to health literacy also extend to providers of health care services. It has been proposed that access to timely, relevant and accurate information about a patient’s health care history helps providers more efficiently manage their patients, providing better more coordinated and safer health care.

With the increasing use of digital technologies, electronic health records are viewed as a way of improving communication across health care providers to improve health care provider’s health literacy. However this form of patient health record is not without its concerns, including security and confidentiality.
In a patient –centred care model, patients can choose (openly or covertly) to follow or ignore their health care provider’s advice. Provided the patient is deemed mentally competent, the provider is obliged to respect their right to control their own health.

So it should be with their health data. It is perfectly reasonable that patients have a say in the use and access to their personal health care information. Who has access to that information may have ramifications in the patient’s life, and so the best person to make decisions about the use of their data is the patient.

However in controlling their health information, patients assume responsibility for the consequences of their choices. They cannot hold caretakers legally or professionally liable for negative outcomes that stem from lacking information that is purposefully missing or hidden. Patients must accept the attendant risks associated with their data decisions.

However, patients cannot competently assess those risks unless they are meaningfully informed of the consequences of restricting access to their electronic records. This poses a considerable challenge; most patients (and, indeed, most caretakers) currently have little understanding of how health information is shared and used.
Researchers from UniSA are interested in developing a better understanding of aspects of health care literacy from consumers’ perspectives. They have developed an anonymous survey which seeks to identify where and how Australians find information about health issues, and what Australians understand and expect when it comes to using their personal health records from multiple health care providers for the purposes of enabling better care.  They want to hear from as many people in Australia as possible.  If you are 18 years or older, and are an Australian permanent resident or citizen, then the researchers want to hear from you.  They are seeking input from everyone who reads or hears about this study to complete the survey so that they can develop a comprehensive understanding about Australians’ perspectives on making healthcare choices, and privacy of personal health data.  This information will be used to assist in improving the quality of, and access to, publically available health information.  It will also be used to develop principles for robust collection and storage of individual health data, and controlled access to it.

By clicking the next button below, the online survey can be completed.

No personally-identifiable information is requested on the survey.  The survey is intended to be anonymous, and the researchers will take every care to keep your data confidential.  However they cannot guarantee the confidentiality or anonymity of material transferred by email or the internet.  Should you use the Surveymonkey link to respond to the survey, your answers will be stored automatically on a password protected server at University of South Australia.  Survey Monkey also stores password protected data in Sweden and USA. 

If you wish more information on the survey and its purpose, you can phone the University of South Australia on 1800 126 334.  If you leave a message, it will be returned within 48 hours.  If you wish to receive a survey in paper-based form, please phone this number and request the survey in this form.  You will need to leave an address for us to send you the survey (we can send multiple copies should you wish to distribute it to others).  We will provide self-addressed, reply paid envelopes for you to return completed surveys.   Please ensure that you do not provide any information on the paper-based survey that would identify you.  The information on the survey form will be data entered by someone who isn’t involved in the study, and the paper copy will be destroyed when the data entry is completed. 

We are working on the notion that if you return the survey (by completing the link below, or competing and returning the paper copy of the survey instrument), then you have consented to participate in this research.

This project has been approved by the University of South Australia’s Human Research Ethics Committee (Protocol number 35745).  If you have any ethical concerns about the project or questions about your rights as a participant, please contact the Executive Officer of the UniSA Human Research Ethics Committee (Vicki Allen) (Vicki.allen@unisa.edu.au; tel 8302 3118).   You can also contact the Project Director, Dr Steve Milanese (steve.milanese@unisa.edu.au) on 83021053 for further information.
We invite you to visit the International Centre for Allied Health Evidence website www.unisa.edu.au/cahe at the end of October for a summary of the findings of the survey. 

T