Bronwyn Hemsley (1), Andrew Georgiou (2), Shaun McCarthy (1), Susan Balandin (3), Rob Carter (3), Sophie Hill (4), Shaun McCarthy (1) , Isabel Higgins (1), and Paulette van Vliet (1)
1 The University of Newcastle, NSW, Australia
2 Macquarie University, NSW, Australia
3 Deakin University, Victoria, Australia
4 La Trobe University, Victoria, Australia
The aim of this interactive workshop is to involve delegates in an examination of the use of the Personally Controlled Electronic Health Record (PCEHR) by people with chronic disabling health conditions and communication difficulties. The several ethical, legal, and logistical issues affecting use of PCEHR by this vulnerable group will be highlighted in Scenario Data, and discussed in interactive small group activities.
The workshop authors represent multiple disciplines (speech pathology, law, health economics, social work, nursing, and physiotherapy) and are currently engaged in research examining the use of PCEHR by people with communication disabilities. The PCEHR is expected to benefit patients with communication disabilities who struggle to convey information about their health at critical points in the health care pathway (e.g., at the GP, at admission to or discharge from hospital). The findings of two systematic reviews (on communication in healthcare settings, and on PCEHR) and four integrated pilot studies on PCEHR use (observation, interviews, survey, focus groups) will be presented and discussed. The literature reviews and pilot studies revealed several barriers to and facilitators for the engagement of people with communication disabilities in using PCEHR, along with many expected benefits to collaborative consultation and person-centred care. Delegates will be actively engaged in considering these barriers, facilitators, and expected benefits in relation to policy, practice, and directions for future research.
Through the presentation and small group activities, the delegates will develop an in-depth understanding of the ethical, legal, practical and logistical issues facing adults with communication disabilities and their service providers in relation to accessing and using PCEHR. Workshop delegates will be provided with an overview of findings from the four pilot studies on PCEHR use and encouraged to consider the legal, ethical, logistical and financial implications for supporting people with communication disabilities to engage in PCEHR. Scenarios based on data gathered in recent research will be used to stimulate discussion on ways to increase the involvement of people with disabilities in shared decision-making around the use of PCEHR.
The three presenters will facilitate small group discussions of the scenario data on PCEHR. In these groups, delegates will identify barriers to and facilitators for use of PCEHR for or by people who have communication disabilities, present in the data. Implications for policy, practice, funding, and future research will be considered. With the presenters, the participants will reflect on: (a) ways that existing paper record documents in supported accommodation settings will integrate with PCEHR (Health Informatics; Georgiou); (b) how PCEHR might support collaboration for health professionals working in separate teams, and improve health interventions (Allied Health; Hemsley); and (c) ways for disability service providers and health professionals to approach using PCEHR with clients and families to ensure a ‘good start’ that promotes early benefits from effective use and sharing of information within the system (Ethics and Law/Rights; McCarthy). Workshop outcomes will be summarised and disseminated using @PCEHResearch and http://www.safetycatchproject.net for onward research translation.
Website for the Conference
International Society for Evidence Based Health Care (ISEHC) and the International Shared Decision-Making (ISDM) group – joint conference ISDM-ISEHC 2015