Developed countries such as Australia are facing a health system challenge: an ageing population putting pressure on the health service and requiring increasingly complex and costly care (AIHW 2014). It has become an absolute necessity for the health system’s sustainability to provide great quality and safety services to patients in order to improve efficiency, especially among ageing healthcare consumers. Among all of the strategies explored to improve the safety and quality of care and reduce costs, partnering with consumers was identified. This can be very effective in reducing readmission rates and length of stay, decreasing rates of healthcare acquired infections and improving adherence to treatment and functional status (ACSQHC 2012). Partnership also significantly improves the experience of care, both for patients and professionals (ACSQHC 2012). Empowering healthcare consumers to improve their wellbeing, especially the elderly, has therefore driven several national health programs (Department Outcomes Australian Government 2011), including planning for end-of-life decisions and giving patients access to their own health information.

Empowering by Giving a Voice even when You Can't Speak

The end-of-life period is a critical decision-making time. Unfortunately, it is also a time when most patients lack the capacity to make decisions as elders are more subject to suffer from serious illness impairing their communication skills. As a solution, it has been proven that using advance care directives leads to a stronger alignment between care provided to patients and their own personal preferences (Silveira et al. 2010). It is critical that Advance Care Planning (ACP), which should occur early in chronic illness (Department of Health of Victoria 2014) is widely promoted. In the US context for example, amongst the elderly population, which is expected to double by 2030, 70% will not have decision-making capabilities at the time of their end of life (Fine et al. 2016). While the benefits of Advance Care Planning (ACP) are not to be argued anymore - it provides greater satisfaction with care, greater quality of life, greater psychological outcomes for individuals and families and ensures the patient’s voice is heard when they can’t talk anymore (Detering et al. 2010) – it is still unclear who should initiate this time-consuming and difficult conversation and when.

Empowering by Providing Information

Since the appearance of Electronic Medical Records (EMR), strongly promoted by various governments, partnering with consumers has taken a new dimension. Patients and their carers now have the ability to access their personal medical record via patient portals. These “secure online website(s) that give patients convenient 24-hour access to personal health information from anywhere with an Internet connection” (HealthIT.gov 2016) have changed the power balance around healthcare. It has enabled patients to review their health information, results and medicine lists, as well as communicate with their providers. Patient portals have also been successful at increasing patients’ engagement with providers, improving health status and increasing individuals’ involvement in disease self-management (Bose-Brill et al. 2016).

These new opportunities that patient portals have brought naturally led to the development of online ACP. Associating EMRs and ACPs to each other may have a synergic effect in systematising both ACP discussion and EMR documentation for individuals, their relatives and their healthcare providers. It could better suit the people who consider end-of-life issues too personal to discuss with non-family members even their clinicians (Fine et al. 2016). Furthermore, an accessible electronic ACP would remove uncertainty for the patient’s next of kin as they attempt to carry out medical care preferences in crisis situations. Finally, healthcare providers can benefit from patient portals as they can assist in standardizing ACP preparation, which over time would normalise and then ease the difficult conversation about ACP and reduce the clinical time required to cover ACP matters (Bose-Brill et al. 2016).

Therefore, several tools have been developed to provide all information about ACP. In Australia for example, amongst other programs, the ‘Advance Care Planning’ website (advancecareplanning.org.au, 2016) provides information regarding ACP and guides consumers on how to build their own ACP, while Vitro Software’s MyNetCare patient portal (Hunter Alliance 2016) focuses on care of patients identified as in the last year of life, allowing them to share their ACP with the relevant stakeholders.

The “Care in last year of life” was identified as a priority area by NSW Health with the need to develop a solution to manage clinical handover and provide a communication tool to encourage conversation between the patient, their carers, family and relevant clinicians in order to be more proactive about important decisions. This led to the MyNetCare program, an initiative of the Hunter Alliance currently being piloted in the Newcastle region.
It provides real-time clinical handover from participating clinicians and services; a summary of the patient’s medical history, current problems, ongoing social supports and current services; details of any advanced care plans and contacts of the patient-identified “Person Responsible”. This project highlights Vitro’s ability to interoperate with multiple complex systems, being directly accessible from various GP patient management solutions and acute electronic medical record solutions in a patient specific context.

Providing Flexible Decision-making Power to the Elderly

The question remained, how relevant is an ACP available on a patient portal for an elderly population? If more seniors are going online than ever (Zickuhret al. 2012), the effectiveness of an electronic ACP still needed to be fully investigated. Consumers’ experience about the use of online ACP showed that individuals could engage in conversations about values and develop an ACP regardless of age and chronic condition. Electronic ACPs proved to be more nuanced in reflecting individuals’ values than paper ones, and improved consumers’ ability to change their ACP when they wanted. Overall, it has improved patient-centred end-of-life care (Fine et al. 2016). The use of a patient portal in an ageing population was reported as moderately or very difficult by only 21.4% of patients and 11.8% of caregivers; however, many reported that they needed help to use the portal feature (Barron’s et al. 2014). Furthermore, despite relatively equal internet and patient portal connectivity in all age groups, individuals in the 50-70-year-old group were more likely to find electronic ACP useful than participants over age 70 (Bose-Brill et al. 2016). Identifying care givers as a solution to address the difficulty for seniors to use a portal had been overly considered (Greysen et al. 2014).

To conclude, an electronic ACP available on patient portal is a relevant and effective tool to increase quality of healthcare while decreasing cost, in particular for the elderly. However, this requires patient portals to have great abilities to adapt to the patients’ needs, and to provide appropriate training both to patients and their carers (Greysen et al. 2014). Furthermore, electronic ACP would be more appealing for younger people, leading to ACP creation at an earlier age than society would normally engage them (Fine et al. 2016), which might positively impact their provision of care.

Marie Pascal - Project Manager at Vitro Software

Marie Pascal joined Vitro Software in 2015 after completing a master’s degree in Health Services Management & Planning. This built on Marie’s extensive clinical experience as a qualified midwife working in France and internationally. Marie is based in Vitro Software’s Sydney office, where most recently she has project managed the MyNetCare patient portal project over the last year, working closely with the Hunter Alliance to see the successful go-live of this pilot in 2016. 

References:

1. Advance Care Planning, Australia, http://advancecareplanning.org.au/, viewed 15th December 2016.
2. Australian Commission on Safety and Quality in Health Care (ACSQHC) 2012, ‘National Safety and Quality Haelth Service Standards’, Sydney, ACSQHC, 2012.
3. Australian Institute of Health and Welfare 2014 Australia’s health 2014, Australia’s health series no. 14. Cat. no. AUS 178. Canberra: http://www.aihw.gov.au/WorkArea/DownloadAsset.aspx?id=60129547764 , viewed on the 12th December 2016.
4. Barron, J., Bedra, M., Wood, J., & Finkelstein, J. (2014, July). Exploring three perspectives on feasibility of a patient portal for older adults. In ICIMTH (pp. 181-184).
5. Bose‐Brill, S., Kobe, C., Kretovics, M., Pressler‐Vyrda, T., Belanger, L., Ballenger, T., & Taylor, R. (2016). Factors Associated with Age Affect Willingness to Engage in Early End‐of‐Life Communication Using Electronic Health Record–Tethered Patient Portals. Journal of the American Geriatrics Society, 64(10).
6. Department Outcomes Australian Government 2011, ‘Aged Care and Population Ageing’, Section 2 – Outcome 4
7. Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. Bmj, 340, c1345.
8. Fine, R. L., Yang, Z., Spivey, C., Boardman, B., & Courtney, M. (2016). Early experience with digital advance care planning and directives, a novel consumer-driven program. Proceedings (Baylor University. Medical Center), 29(3), 263.
9. Greysen, S. R., Garcia, C. C., Sudore, R. L., Cenzer, I. S., & Covinsky, K. E. (2014). Functional impairment and Internet use among older adults: implications for meaningful use of patient portals. JAMA internal medicine, 174(7), 1188-1190.
10. HealthIT.gov, What is a patient portal?, https://www.healthit.gov/providers-professionals/faqs/what-patient-portal, accessed on the 06 December 2016.
11. MyNetCare - Our Alliance Hunter, Hunter Alliance, Australia 2016, http://ouralliance.healthpathways.org.au/MyNetCare.aspx, Viewed 15th December 2016.
12. Sarkar, U., & Bates, D. W. (2014). Care partners and online patient portals. Jama, 311(4), 357-358.
13. Silveira, M. J., Kim, S. Y., & Langa, K. M. (2010). Advance directives and outcomes of surrogate decision making before death. New England Journal of Medicine, 362(13), 1211-1218.
14. State of Victoria, Department of Health 2014, ‘Advance care planning: have the conversation, A strategy for Victorian health services 2014 – 2018’, Melbourne.
15. Zickuhr, K., & Madden, M. (2012). Older adults and internet use. Pew Internet & American Life Project, 6, Accessed December 05/2016.