Public Mistrust in the Digitalisation of Health Records

Judith attended the 2018 OECD Forum in Paris. She is currently studying a Bachelor of Laws (Honours) and Bachelor of Business at the Queensland University of Technology and works part time as a Law Clerk.

Abstract

The digital economy contributes to the global economic growth and advances human wellbeing.  Alongside these benefits, however, come increasing risks that impact vulnerable environments across both the public and private sector. These risks include security threats, theft, and illegal activity, but potentially the most concerning is the risk of an increased lack of trust in governments and institutions. How can the Australian government address this risk and instead utilise digital transformation to regenerate trust in its systems, in particular in e-healthcare?

This paper outlines how the Australian government can re-evaluate their current digital strategies and policies to bolster consumer trust towards Electronic Medical Records (EMR), in an age of digital security risk.  After reviewing existing practices and policy, this paper will provide recommendations to increase engagement between the Australian Government and patients, in order to achieve a fully digitalised and integrated electronic Medical Records (‘ieMR’). Additionally, this paper will explore how the Australian government can employ digital initiatives to cultivate a level of trust within EMR to help facilitate its advancement.

Context

The concept of E-health – health services and information delivered or enhanced via the internet and related technologies - creates a more equitable and sustainable health system, by providing greater accessibility to patients. The transition from individualised paper records to EMR is one growing area of E-health within Australia. There are many factors pushing the drive for EMR, including; 

o  The numerous and varied healthcare providers for a patient (e.g. general practitioners, psychologists and physiotherapists) require a system that gives them all access to a patient’s medical records. 

o  The multiple locations where medical services are provided to patients can result in the fractioned distribution of patient records, particularly if records are unable to flow freely from location to location. 

o  The growing demand for accountability and consistency of care within the health system. 

o  Patients’ desire to play an active role in the management and provision of their personal health care, which can only properly take place when they have easy access to their records.

Benefits of the digitalisation of healthcare records

In our current digital age, patients require fast-paced, immediate solutions to access their medical results and records. Many are not willing, and in certain cases not able, to expend time on traditional processes and paperwork. Patient access to digital records improves their interaction with their medical practitioners, providing context for diagnosis and a greater understanding of their healthcare requirements. Furthermore, it provides more effective healthcare solutions by removing treatment delays caused by missing data, working to speed up the patient’s overall recovery and wellbeing.

For medical practitioners, digital healthcare records deliver precise, up-to-date and comprehensive information about their patients at the point of care. It provides secure care by allowing for an accurate diagnosis, whilst reducing medical errors through more legible and complete documentation. This accuracy is further enhanced by providers who are required to complete compulsory data fields and use standardised terminology. It also improves provider’s productivity by allowing them instant access to all patient records, reducing duplicity and unnecessary use of time and resources.

For other parties, such as legal firms representing a client in a personal injury proceeding, access to their client’s health records, with due permission, in a timely manner is of high importance to substantiate the claim. The accurate digitalisation of these records and the timeliness in accessing them is necessary to the success of the case.

The current state of ieMR

At present, there are numerous hospitals with different stages of ieMR. A hospital that is fully digital utilises the entire benefits of digital transformation. However, having fragmented stages of ieMR developments in various hospitals inhibits the direct real-time uploading and sharing of ieMR between public hospitals. Creating a fully digitalised hospital has its difficulties, especially concerning privacy and security. Patients are concerned about the privacy of their data and the trustworthiness of the current IT systems put in place to protect them.  An example of a breach of trust that contributed to this concern involves the 2017 IT glitch that impacted five Queensland hospitals, after government efforts to protect the system from a major ransomware attack. The protection was successful, however, E-patient records crashed causing a system-wide breakdown. Whilst there were no actual data or security breaches, serious damage to public trust towards eHealth was incurred. Consequently, the pilot site for a rollout of a Digital Hospital in Cairns was deemed defective. The rollout has since been restored, but the hospital must now work to reassure public trust towards the program. 

‘My Health Record’

The most recent development in Australian eHealth is ‘My Health Record’ (MHR), an online summary of a patient’s health information. The program aims to provide all Australians with a My Health Record by the end of 2018 unless they opt out and choose against it. This system allows patients to manage their medical records online and provides medical professionals with timely access to information regarding their patients. More so, it is accessible by medical professionals in both the public and private sectors, making it particularly useful for patients that alternate between sectors. 

The introduction of a My Health Record provides a cost-effective flow of medical information across all medical fields. It also helps overcome the fragmented state of health information, by providing uniform access across the field. Once a patient registers for an MHR, they can set up privacy and security controls, track their medical developments, and control who can access their records. Information from health care visits, Medicare information, test results, scans, and prescribed medication details can all be stored on an MHR.  The key proponent of an MHR is the opportunity given to Australians to opt-in or opt-out of having a digital record. Despite two-thirds of Australians wanting their healthcare records to be more effectively utilised among healthcare providers, only 38 per cent consider signing up to an online repository of their information. A concern for the security and the privacy of online personal information is shown to be a major factor in the hesitancy for Australians to opt for an MHR. To build trust towards MHR, governments and healthcare providers must effectively communicate the values of ethical conduct and transparency to patients. An increase in public engagement of the benefits of shared digitalised records is a necessary step to cultivate public trust with Australians.

In anticipation of MHR, a new partnership between the Royal Australasian College of General Practitioners and the Australian Digital Health agency has been created to ensure general practitioners will be involved actively in the roll-out of MHR. This partnership is intended to train doctors to use MHR and adequately prepare them for any questions raised by patients. As part of the partnership, education modules for general practitioners will include advice on ways to integrate GP practice systems, protection and cybersecurity, and methods to best utilise MHR to improve patient care. Furthermore, the Practice Incentive Program eHealth incentives have also been created to educate general practitioners about the latest updates in digital health and new technology as it becomes available.

To support hospitals, the Australian Digital Health Agency has created training information guides to help medical professionals understand privacy, consent and opt-out resources and provides the ability to request face-to-face education and training. To prepare pharmacies, awareness and training programs are being instigated by the Pharmaceutical Society of Australia for their members, including the provision of the My Health Record Guidelines for Pharmacists.

 Policy Recommendations

1.    A national campaign from the Government, in partnership with the medical community, to educate Australians on the benefits of medical record digitalization and increase participation in MHR. 

2.    Compliance with comprehensive audit trail reporting protocols.

Recommendation One: A national campaign from the Government, in partnership with the medical community, to educate Australians on the benefits of medical record digitalization and increase participation in MHR

This recommendation will help the Government raise public awareness of its e-healthcare activities, promote consumer trust, and increase the percentage of patients who opt-in for an MHR. This recommendation will also help to create an open dialogue about the benefits of digital medical records and provide a space to facilitate conversation with the public about the policies and procedures currently in place to protect their privacy. The key messages that should be communicated to the public include: the benefits of ieMR, practical methods consumers can take to protect data, and the current Government led initiatives aimed at protecting public ieMR data.

This national campaign should include the opportunity for the medical community to co-brand initiatives and workshops held in partnership with medical professionals to advocate for increasing public participation with the MHR. 

National branding campaign

Active participation of stakeholders to address user rights encourages the creation of a digital government ecosystem. Trust in the government is increased by improved interactions through the eHealth platform on a local level, creating positive attitudes towards the government. This is vital in fostering a spirit of active engagement from consumers to have confidence and assurance for opting in into the digitalisation of their medical records.   

An effective branding campaign can communicate the values, beliefs and goals at the core of why ieMR is beneficial and what the government is doing, and this is a useful way of establishing trust through a modern platform. Branding the campaign in this reach, with a discernible name, identity and brand communication style is a successful tool to convey the message to the broader community. 

Placing the promotional campaigns within proximity of medical practices and hospitals provides context for patients to engage with the campaign. The campaign can address anticipated questions from patients, such as what is being done to protect their records and why their records need to be shared among medical practitioners. By anticipating patient issues and questions about the MHR, any concerns that may lead to opting out of MHR can be addressed and mitigated.  Furthermore, the optimisation of Quick Response (QR) codes, which are machine-readable codes used to transfer information from a transitory media to a smartphone, can be used in the campaign to link patients to the MHR website and contact details to a support line where users can ask any further questions. 

Public workshops delivered by medical professionals
 

Government participation in medical practices and allied health services through the offerings of workshops and seminars for patients are another tool to effectively communicate key messages in a format that engages the community and increases reachability. The workshops will include the key messages in a way that utilises human connection and face-to-face communication, allowing the opportunity for patients to also voice their concerns regarding digitalisation of their records and be heard. As part of the communication of the ‘main messages,’ these workshops will include empirically supported evidence of the positive outcomes that digitalisation brings about. This will help to improve overall community experience of the digitalisation process and creates a tangible and measurable way to engage with citizens to promote an environment of co-creation.

Moreover, targeted medical-related sponsorships could be leveraged towards the running of these workshops further incentivising public consent for digitalisation. For example, a reduced price of a non-prescription item for those who opt-in for MHR. By getting consumers to opt-in to MHR through workshops, consumer care and concerns are directly addressed, mitigated and monitored. Having workshops result in a consumer-focused model to raise consumer involvement in the advancement of digital records and will consequent in higher involvement in their MHR.

Recommendation Two: Compliance with comprehensive audit trail reporting protocols. 

A comprehensive audit trail will help build the Government’s capacity to deal with the challenges of digital transformation relating to private and sensitive information.


An audit trail is an inbuilt process that keeps a record of who accesses patient records when they access it, and any additional changes inputted into the system. The development of comprehensive audit trail reporting protocols by the Government will aid the communication of relevant information to consumers and medical practitioners. Frequent reporting and delivery of this reporting will allow users to identify any inappropriate record access and ensures compliance with internal policies. By having clear access trails, secure monitoring of authorized personnel can take place. Authorized personnel can be personnel such as medical staff, administrators, medical records management, finance/billing staff, supporting medical staff and patients who have access to the records. Inappropriate access from external threats such as malware, ransomware and criminal groups as well as third party visitors can be identified and dealt with accordingly. 

The ability to view who accesses records increases transparency, ultimately improving the trust in the privacy and security of records. This mitigates the patient’s concerns on privacy breaches as it assures that their records are only being accessed by authorised personnel. Moreover, it ensures document integrity by noting when a change is made to a record. The effectiveness of an audit trail is based on how comprehensive the record keeping is. In efforts to increase transparency to consumers and communicate that privacy concerns are being considered, the development of more comprehensive audit trail protocols and the consistent delivery of those trails to patients is imperative. 

Whilst audit trails are a useful safeguard, correct and accurate automation is required. Therefore, it is recommended that third-party auditors conduct an audit of the trails and provide ongoing feedback into the record-keeping protocols. This will ensure adherence to legal standards and the compliance of proper billing and coding.

Limitations

Privacy and security concerns from the public are a key barrier to realising the full benefits ieMR can bring.  Societal trust falls short when directed towards the government’s data and technological ability. This also points to a lack of understanding towards the benefits of ieMR and how it can transform the way patients interact with their medical practitioners and advance the medical field. Digital security risk is a prevalent issue and will increase as digital transformation progresses. Privacy issues are evolving where sensitive data misuse can occur. 

At present, there are many members of the public who feel they are being “quietly forced” into the system, and that the system is “sneaky, secretive back-door data grabbing.” This feedback indicates that the digitalisation of health care in Australia is already creating public mistrust. If the Government does not make prompt key strategic decisions to address this mistrust and communicate its usefulness and benefits, it will only continue to grow. 

The digitalisation of patient medical records is inevitable both through fully digitalised hospitals and MHR. eHealth and applications of electronic equipment for medical tasks are growing annually by 10% in Europe and Australian hospitals will need to catch up in order to compete globally. The current population of Baby Boomers (people born between 1946 and 1964) are becoming progressively comfortable with the increased digitised world. Technology is already becoming fused with millennials (people born between 1981 and 1996) and subsequent generations through industries such as education and trade.

Digitalisation is the key to a sustainable pathway for innovative growth and technological development. However, it can often occur hastily and become mismanaged, resulting in public mistrust. It is essential that it is well-managed, with proper incentives and clear strategic policy in place to assist in the development of public trust and confidence.

Conclusion

The rise of the digital economy brings with it great benefits that contribute to the overall sustainment and improvement of global economic growth. 

The digitalisation of healthcare records is a development that creates numerous positive outcomes for both patients and medical practitioners. Patients, in particular, have an increasing desire to be more involved in their medical decisions, and practitioners require timely and comprehensive access to their patient records, in order to make the most informed and effective treatment decisions. To access the benefits ieMR can offer, privacy and security concerns must be acknowledged so that public trust in the system can be strengthened and engagement is improved. 

This paper proposed increased government participation through a national marketing campaign used to engage consumers, deliver workshops to communicate medical digitalisation benefits, and co-branding with the health service industry and Australian medical community, to ensure the longevity of digitalisation. Additionally, this paper called for the development of more comprehensive auditing trails and the detailed reporting of those trails, in order to register the identity of those accessing patient records and monitor how data is being used, managed, and stored. By increasing trust and harmonisation of policies around the digitisation of medical records, the Government will see an increased uptake and use of the ieMR and MHR. 

 

 

BIBLIOGRAPHY

Accenture (2016). Digital Solutions can drive progress toward United Nations Sustainable Development Goals by 2030. Retrieved from https://newsroom.accenture.com/news/digital-solutions-can-drive-progress-toward-united-nations-sustainable-development-goals-by-2030-finds-report-from-global-e-sustainability-initiative-produced-with-accenture-strategy.htm

Accenture. (2017). Person-centric – Reimagining Australian Digital Healthcare. Retrieved from Victorian Healthcare Association website https://vha.org.au/docs/172692_person-centred-digital-health_au.pdf

Alhaqbani, B. (2010). Privacy and Trust Management for Electronic Health Records. (Unpublished doctoral dissertation). Queensland University of Technology, Brisbane, Qld

Association of Healthcare Internal Auditors. (2013). Auditing EMR Documentation. Retrieved from https://www.resourcenter.net/images/AHIA/Files/2013/AnnMtg/Handouts/F4.pdf

Australian Digital Health Agency. (n.d). What is My Health Record? Retrieved from https://www.myhealthrecord.gov.au/for-healthcare-professionals

Australian Digital Health Agency. (nd). Practice Incentives Program (PIP eHealth Incentive). Retrieved from https://www.myhealthrecord.gov.au/for-healthcare-professionals/practice-incentives-program

Australian Digital Health Agency. (nd). My Health Record in the hospital setting. Retrieved from https://www.myhealthrecord.gov.au/for-healthcare-professionals/hospitals 

Australian Medical Association. (2016). Shared Electronic Medical Records – Revised 2016. Retrieved from  https://ama.com.au/position-statement/shared-electronic-medical-records-revised-2016 

Bateman, D. (2017). Cairns Hospital suffers software ‘catastrophe’ with possible loss of patient data. Retrieved from https://www.cairnspost.com.au/news/cairns-hospital-suffers-software-catastrophe-with-possible-loss-of-patient-data/news-story/c828de3f4a0f73132ec3d19284cbae88

Bateman, D. (2017). Chaos at Cairns Hospital from collapse of eHealth software program. Retrieved from https://www.cairnspost.com.au/lifestyle/chaos-at-cairns-hospital-from-collapse-of-ehealth-software-program/news-story/bc74edcd1f2c0f92e2a115b2c8bb78c7

Billingham, G. (n.d). EHR Liability and Risk Management Strategies. Retrieved from https://www.medpro.com/documents/10502/2820774/Article_EHR+Liability+and+Risk+Management+Strategies.pdf

Cisco Systems, Inc. (2016). The Digitization of the Healthcare Industry: Using Technology to Transform Care. Retrieved from https://www.cisco.com/c/dam/en_us/solutions/industries/docs/digitization-healthcare.pdf

Content Group (2016). How can the government strengthen their brand? Retrieved from https://contentgroup.com.au/2016/11/can-government-strengthen-brand/

Gray, J., & Pearce, C. (2017). Canberra Hack Digital Transformation. The Australian Financial Review. Retrieved from https://gateway.library.qut.edu.au/login?url=https://search-proquest-com.ezp01.library.qut.edu.au/docview/1876564953?accountid=13380

Information Systems Security Association International. (2016). Auditing and Access to Electronic Health Records. Retrieved from https://c.ymcdn.com/sites/www.issa.org/resource/resmgr/healthcare_sig/HealthcareSIGDec2016.pdf

Kim, B & Kim J. (n.d). Increasing Trust in Government through more Participatory and Transparent Government. http://www.unpan.org/innovmed/documents/Vienna07/28June07/BSKIM.pdf

Konhäuser, A. (2017). Digitalization in the Healthcare Industry: An Interview with Dr Anja Konhäuser. Retrieved from https://www.ommax-digital.com/blog/digitalization-healthcare/

Minion, L. (2017). Concern grows about the opt-out function as healthcare industries sign up to connect with My Health Record.Retrieved from http://www.healthcareit.com.au/article/concern-grows-about-opt-out-function-healthcare-industries-sign-connect-my-health-record

Minion L. (2018) New Partnership announced to prepare GPs for the national expansion of My Health record.Retrieved from https://www.healthcareit.com.au/article/new-partnership-announced-prepare-gps-national-expansion-my-health-record

Minion, L. (2018). Most Australians would not sign up to an online health record, survey finds. Retrieved from https://www.healthcareit.com.au/article/most-australians-would-not-sign-online-health-record-survey-finds

Mitchell-Whittington, A. (2016) Princess Alexandra Hospital Brisbane pioneer’s digital rollout in Australia.Retrieved from https://www.brisbanetimes.com.au/national/queensland/princess-alexandra-hospital-brisbane-pioneers-digital-rollout-in-australia-20161030-gse6jq.html

National Research Council. (1997). For The Record: Protecting Electronic Health Information. https://doi.org/10.17226/5595

OECD. (2016). Digital Government Strategies for Transforming Public Services in the Welfare Areas. Retrieved from http://www.oecd.org/gov/digital-government/Digital-Government-Strategies-Welfare-Service.pdf

OECD. (2017). Going Digital: Making the Transformation Work for Growth and Well-Being. Retrieved from https://www.oecd.org/mcm/documents/C-MIN-2017-4%20EN.pdf

Palgon, G. (2017). Digitizing Delivers: The Benefits of Electronic Health Records (EHR). Retrieved from https://www.liaison.com/blog/2017/05/19/digitizing-delivers-benefits-electronic-health-records-ehr/

Price Waterhouse and Coopers. (2012). Transforming the citizen experience. Retrieved from https://www.pwc.com/gx/en/government-public-sector-research/pdf/one-stop-shop-2016.pdf

Queensland Health. (2017). My Health Record.Retrieved from https://www.health.qld.gov.au/system-governance/records-privacy/my-health-record

Saskatchewan Medical Association. (2013). Privacy and Security Resource Materials for Saskatchewan EMR Physicians. Retrieved from https://www.sma.sk.ca/kaizen/content/files/Reference_Manual_Jan_2013(1).pdf[1]Frantz, D. (2017). Going Digital – making the transformation work for growth and well-being.Retrieved from https://www.oecd-forum.org/users/42484-douglas-frantz/posts/17393-going-digital-making-the-transformation-work-for-growth-and-well-being.