with Centre for Health Systems and Safety Research, Australian - PowerPoint PPT Presentation

School of Humanities and Social Sciences, Faculty of Education and Arts, School of Nursing and Midwifery, School of Health The Personally Controlled Electronic Sciences, Faculty of Health and Medicine Newcastle Law School, Faculty of Business and Health Record (PCEHR) for Adults Law, The University of Newcastle with Centre for Health Systems and Safety Research, Australian Institute of Health Severe Communication Impairments: Innovation, Macquarie University Findings of Pilot Research School of Health and Social Development, Faculty of Health, Deakin University School of Psychology and Public Health La Trobe University Authors: Bronwyn HEMSLEY, Andrew GEORGIOU, Susan BALANDIN, Rob CARTER, Sophie HILL, Isabel HIGGINS, Paulette VAN VLIET and Shaun McCARTHY HISA Health Informatics Conference, 3-5 August 2015, Brisbane Australia http://ebooks.iospress.nl/volumearticle/40075

We thank and acknowledge the participants for their giving generously of their views and experiences. Funding: The University of Newcastle and NHMRC Research Associate Ms. Natalie Adams Pic: Melissa Sweet @WePublicHealth Pics: Gary Radler www. garyradler.com photos of people with a disability used according to the license.

Reading ABS, Disability, Ageing and Carers, Australia: Summary of Findings, 2012. Australian Bureau of Statistics. B. Hemsley & S. Balandin, A metasynthesis of patient-provider communication in hospital for patients with severe communication disabilities: informing new translational research. Augmentative and Alternative Communication, 30 (2014), 329-43. S. Hill, The Knowledgeable Patient: Communication and Participation in Health. A Cochrane Handbook. Wiley-Blackwell: London, 2011. NSW Ombudsman, Report on reviewable deaths. NSW Government. 2011, 2013, 2015.

Communication Disabilities ~ 6.1% (~1.4M) Australians: Severe or profound limitations affecting core activities communication, mobility, self care (ABS, 2012). Photos: Gary Radler

Health service problems in this group ... significantly higher health service utilisation ... three fold increased risk for Pt Safety incidents Pic: Jaime Puebla ... problems with admission, care, discharge, re- admission ... reliance on family carers who are Pic: themselves ageing Gary Radler

Problems relate to inadequate health information exchange Poor health information exchange and follow-up leads to a cascade of errors and, at the most extreme, premature death. Pic: Sam Hames www.flickr.com/photos/samhames/4670368999/

Hemsley & Balandin (2014) metasynthesis review: strong rationale for shared health information to replace the ineffectual written folders patients/carers take to hospital, and the need to address substantial problems with care and safety. ... six core strategies

6 core strategies to improve communication in hospital: • develop services, systems, and policies that support improved communication, • devote enough time to communication, • ensure adequate access to communication tools (nurse call systems and communication aids), • access personally held written health information, • collaborate effectively with carers, spouses, and parents, and • increase the communicative competence of hospital staff. B. Hemsley & S. Balandin, A metasynthesis of patient-provider communication in hospital for patients with severe communication disabilities: informing new translational research. Augmentative and Alternative Communication, 30 (2014), 329- 43.

Potential of PCEHR The Personally Controlled Electronic Health Record (PCEHR) is “an electronic record for a patient that contains a summary of their health information from all their participating healthcare providers ”.

NSW Health

Person with a disability Authorised representatives Nominated representatives Roles of family carers Roles of paid carers Registered providers Speech Path PT Patient with Communication OT Psych Disability Specialist Practice GP Hospital Can view the record Nurse / ATSI Patient note; e.g., Shared PCEHR Specialist Discharge Emergency Health Summary / Letters summaries contacts; Event Summary Advanced Care Directive holder Medicare PBS Organ Donor Prescribe/Dispense Immunisations

What supports are needed to use PCEHR? Person Centred Decisions / Supported Decision-Making Shared Decision-Making / Substitute Decision-Making

AIM To investigate people’s views and experiences of PCEHR, so as to identify barriers and facilitators to using PCEHR [to inform future policy direction and future research].

Study 1: Observation at home • Young adult under 25 with Cerebral Palsy • Interview + observation of access to health information at home. • Health information in an expandable file (not able to access independently) v • Reports in email / documents folders (independent access using assistive technology) • Not stored systematically; no cross-referencing; incomplete. • Had not previously heard of PCEHR.

“Every doctor PCEHR … an “awesome asks what idea … you don’t have medicine” to worry about giving health professionals “... Sometimes they whatever they need” don’t understand, feels degrading. I am like any young adult.” “I wish everything “... Need someone was on the to help for the computer.” folder … I have to wait.” I think disability orgs should tell clients about PCEHR … “You can see all your personal health ... i f I hear it isn’t information and it is private and safe there any time you (it would stop me) need it.”

Study 2: Survey Interviews “Every meeting with a new health professional requires “It is so tiring to continually a lot of work for them to explain my history and understand.” progress.” ... “want more 12 participants, 1 with PCEHR. information All lacked confidence about it” communicating with unfamiliar healthcare providers. ... thought PCEHR would help them to store and share info important to them.

Study 3: Focus groups ...” ( Pts) are capable of “... fabulous if making those it’s all there “Unless we’re able to decisions for but ...” get somebody else to themselves they just enter the information can’t communicate it” we felt was important we can’t really use it.” “...unlikely that the clients are “What the allied going to get the health person needs option to opt to know when out.” someone turns up for an appointment” Health providers and disability support workers lack knowledge of PCEHR that would impede “... it will also be supports for people with disability using the really good to have system. Held misapprehensions of the PCEHR alert information.” based on incorrect assumptions. (access, Both : responses based on ‘hypothetical use’; no behaviour) experience of ‘actual use’ of PCEHR in real situations.

People with communication disability & their supporters need guidance on how to: • Access information about PCEHR and register / authorised reps • Organise and prepare information for upload to the PCEHR • Integrate hard and soft copy documents (on the home computer) with documents in the PCEHR. • Introduce the PCEHR to their health service providers They also need: Information on rights and responsibilities of all involved in using PCEHR; along with risks and benefits, and safe use.

Conclusions v

Future Research on PCEHR b) Configuration, c) Risks & benefits a) Factors affecting d) People, teams, & types, timing, and of use for people successful use for processes needed to amount of support with communication all involved deliver supports needed to use disabilities e) Costs and potential cost offsets of An exploratory economic appraisal that draws supporting the target population to together findings of (a)-(e) to model potential use cost-effectiveness Will the investment of time and effort by people with severe communication impairments and their supporters in using PCEHR see improved health information exchange when people with these disabilities meet with health professionals?

#PCEHResearch #MyHealthTransit @bronwynhemsley bronwyn.hemsley@newcastle.edu.au www.safetycatchproject.net The University of Newcastle, Australia