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

HISA Health Informatics Conference, 3-5 August 2015, Brisbane Australia

http://ebooks.iospress.nl/volumearticle/40075

The Personally Controlled Electronic Health Record (PCEHR) for Adults with Severe Communication Impairments: Findings of Pilot Research

Authors: Bronwyn HEMSLEY, Andrew GEORGIOU, Susan BALANDIN, Rob CARTER, Sophie HILL, Isabel HIGGINS, Paulette VAN VLIET and Shaun McCARTHY

School of Humanities and Social Sciences, Faculty of Education and Arts, School of Nursing and Midwifery, School of Health Sciences, Faculty of Health and Medicine Newcastle Law School, Faculty of Business and Law, The University of Newcastle Centre for Health Systems and Safety Research, Australian Institute of Health Innovation, Macquarie University School of Health and Social Development, Faculty of Health, Deakin University School of Psychology and Public Health La Trobe University

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

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

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

Speech Path PT Specialist OT

Specialist Letters e.g., Shared Health Summary / Event Summary Patient note; Emergency contacts; Advanced Care Directive holder

GP

Practice Nurse / ATSI

Psych Medicare PBS Immunisations Prescribe/Dispense Organ Donor

Can view the record

Hospital

Discharge summaries

PCEHR

Person with a disability Authorised representatives Nominated representatives Roles of family carers Roles of paid carers Registered providers Patient with Communication Disability

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].

v

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)

• Reports in email / documents

folders (independent access using assistive technology)

• Not stored systematically; no

cross-referencing; incomplete.

• Had not previously heard of

PCEHR.

“I wish everything was on the computer.” “Every doctor asks what medicine” I think disability

• rgs should tell

clients about PCEHR … PCEHR … an “awesome idea … you don’t have to worry about giving health professionals whatever they need” “... Sometimes they don’t understand, feels degrading. I am like any young adult.” “... Need someone to help for the folder … I have to wait.” “You can see all your personal health information and it is there any time you need it.” ... if I hear it isn’t private and safe (it would stop me)

Study 2: Survey Interviews

“It is so tiring to continually explain my history and progress.”

... “want more information about it”

“Every meeting with a new health professional requires a lot of work for them to understand.”

12 participants, 1 with PCEHR. All lacked confidence communicating with unfamiliar healthcare providers. ... thought PCEHR would help them to store and share info important to them.

Study 3: Focus groups

“... fabulous if it’s all there but ...” “What the allied health person needs to know when someone turns up for an appointment” ...” (Pts) are capable of making those decisions for themselves they just can’t communicate it” “Unless we’re able to get somebody else to enter the information we felt was important we can’t really use it.” “...unlikely that the clients are going to get the

• ption to opt
• ut.”

“... it will also be really good to have alert information.” (access, behaviour)

Health providers and disability support workers lack knowledge of PCEHR that would impede supports for people with disability using the

• system. Held misapprehensions of the PCEHR

based on incorrect assumptions. Both: responses based on ‘hypothetical use’; no 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.

v

Conclusions

Future Research on PCEHR

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?

a) Factors affecting successful use for all involved b) Configuration, types, timing, and amount of support needed to use c) Risks & benefits

• f use for people

with communication disabilities d) People, teams, & processes needed to deliver supports e) Costs and potential cost offsets of supporting the target population to use An exploratory economic appraisal that draws together findings of (a)-(e) to model potential cost-effectiveness

#PCEHResearch #MyHealthTransit

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