Consumer health informatics for people who use AAC: Views on e-health records at home
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Paper presented at the International Society for Augmentative and Alternative Communication (ISAAC) Biennial Conference in Toronto, Canada, August 8th to 12th 2016.
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Consumer health informatics for people who use AAC: Views on e-health records at home
- 1. Consumer health informatics for people who use AAC: Views on e-health records at home Bronwyn Hemsley1 @bronwynhemsley bronwyn.hemsley@newcastle.edu.au, Andrew Georgiou2, Natalie Adams1, Megan Rollo1, Shaun McCarthy1, Sophie Hill3, Paulette van Vliet1, Susan Balandin4. 1The University of Newcastle, 2Macquarie University, 3La Trobe University, 4Deakin University Paper presented at the International Society for Augmentative and Alternative Communication Biennial Conference at Toronto Ontario Canada 8th-12th Aug 2016
- 2. Acknowledgements National Health and Medical Research Council (NHMRC) Project Grant Funding 2014-2017 Participants and recruiting organisations
- 3. Background and Aims In this paper we will: (a) outline the rationale for using eHealth records by providing an overview of relevant research on consumer health informatics, health literacy, and legal and ethical issues related to the use of personal eHealth records, and (b) present the findings of three studies aiming to investigate the barriers to and facilitators for personal eHealth record use by people who use AAC and their service providers. Implications for people who use AAC will be explored and discussed in relation to sociotechnical factors affecting participation in health technologies.
- 4. Background There is an urgent ethical imperative to focus research efforts on personal e-health records in populations with severe communication communication disability, who: Have multiple health needs and healthcare providers (++ info) Have a threefold increased risk of adverse events, and Are at risk of being excluded from use of the e-health record systems unless there are adequate supports from disability service providers and carers.
- 5. Legal and Ethical Issues [4] Reviewed legal and ethical issues relating to a personally controlled e-health record by people with a communication disability (in Australia). (My Health Record)
- 6. • Sharing e-health records offers substantial benefits to individuals, to the healthcare providers who work with them, and to the health system as a whole. • Implementation will be affected by poor awareness, lack of knowledge, negative attitudes, or problems determining the person’s wishes and preferences, result in barriers to meaningful participation. • These barriers to participation could further impede the benefits of sharing e-health records. • Strategies are available to maximise the substantial benefit offered by effective consumer participation in the system. • Research is needed to guide future policy and evaluate ways to improve implementation for a range of diverse populations, particularly those in marginalised or disadvantaged groups (see Goldzweig et al., 2013).
- 7. Health documentation in residential care [5] • Evidence scan and consultation with experts about information management (infrastructure) in supported accommodation in Australia. • Reviewed journal articles, disability death reports, information documents used in residential care (available to public, online).
- 8. How do we apply existing models to bridge the gap? • The ideal is not yet a reality. Despite policies urging person-centred care and support, documents and their organisation/transmission/sharing is not person-centred.
- 9. Two relevant models 9 WHO Conceptual framework for people- centred and integrated health (2015) 8-dimensional Socio-Technical Model of Safe & Effective Health IT Use (Sittig Singh) 2010
- 10. Health literacy demands of e-health records [6] • Reviewed 24 studies worldwide that addressed health literacy concerns re shared e-health records in any patient group. • Vulnerable patients included older people, people with chronic health conditions, Veterans; only 2 studies included people with communication disability • Multiple factors impact on use of e-health records, including digital literacy, health literacy, communication, attitudes, fears, beliefs, values.
- 11. A sociotechnical case study [7] Young adult with CP and CCN needed full assistance to access paper health records at home (2 x expandable files) but accessed personal e-health information on a computer independently. • Wanted disability organisations to explain e-health records. • Had no system on computer for organisation of e-health information (arranged on email attachments, documents folder only) • Received e-health information in the form of reports, appointment letters, emails.
- 12. A survey study [7] • 12 adults with diverse communication disability (stroke, cerebral palsy, brain injury). • All participants lacked confidence communicating with unfamiliar healthcare providers • considered that e-health records would help them by improved ‘storing’ and ‘sharing’ of health information that was important to them. “It is so tiring to continually explain my history and progress. Every meeting with a new health professional requires a lot of work for them to understand” (4)
- 13. A focus group study [7] Participants in our pilot study were care workers in supported accommodation (n = 9), allied health clinicians (n = 5), parents (n = 2), medical staff (n = 2), and nurses (n = 6). Overall, the focus group discussions reflected diverse views and major content themes of: (a) barriers and facilitators; (b) benefits and limitations; (c) ethics, consent, privacy, and accuracy; (d) roles of carers and direct support workers; (e) advocacy and self-advocacy; and (f) health literacy.
- 14. Discussion Implications for people who use AAC will be explored and discussed in relation to sociotechnical factors affecting participation in health technologies.
- 15. 15 8-dimensional Socio-Technical Model of Safe & Effective Health IT Use (Sittig Singh) 2010 Service providers lack knowledge, fearful re workflow Support workers and parents unsure of roles & responsibilities / rights Person keen and positive about potential of e-health records Australian legal/health infrastructure supports person- centred sharing of an e-health record Lack of Policy No systems to measure or monitor Ideal + Reality
- 16. WHO Conceptual framework for people-centred and integrated health (2015) Australian legal/health infrastructure supports person-centred sharing of an e-health record “My Health Record” Support workers and family unsure of roles & responsibilities / rights Lack of Policy Service providers lack knowledge Service providers skeptical and fearful/cautious about person- centred e-health informatics Person keen and positive about potential of e-health records Ideal vs Reality Public: most have ‘never heard of it’
- 17. Implications Demand for effective exchange of health information will increase as disability service transitions from highly regulated government to non-government providers through individual funding packages.
- 18. AAC integration & design • User centred design of e-health records for people who use assistive technologies / AAC to communicate and access the computer and internet for e-health. • Provision for AAC literacy supports to health literacy in relation to e-health records. • Self-advocacy by people who use AAC that healthcare providers and support workers know and support e-health initiatives. • e-health literacy for people who use AAC, their support workers, and families. • Right and responsibilities of all involved made clear in policy and practice.
- 19. Paper + e-health records • Home ‘consumer health informatics’ systems management (organisation) • Sharing of health information at home and externally • Integration of paper with e-health records / overlap • Currency, accuracy, completeness of information • Person-centred nature of sharing of information • Accessibility of systems infrastructure and information • How will people who use AAC direct and control the use of their e-health record? • How will appropriate and safe use be assured, with adequate monitoring and evaluation at home?
- 20. Directions for future research Determine the configuration, types, timing, and amount of support needed for adults with severe communication disability to use e-health records: (a) Factors affecting successful use of personal e-health records by people with severe communication disability, their families, support workers, and health service providers (b) Risks and benefits of personal e-health records use for people with severe communication disability; (c) People, teams, and processes needed to deliver supports for functional use of e-health records. Costs and potential cost offsets of supporting the target population to use e-health records. (d) An exploratory economic appraisal that draws together findings of (a)- (d) to model potential cost-effectiveness.
- 21. References [1] A. Hordern, et al., (2011). Consumer e-health: An overview of research evidence and implications for future policy. Health Information Management Journal, 40. 6-14. [2] S. Hill, (2011). The Knowledgeable Patient: Communication and Participation in Health. A Cochrane Handbook. Wiley-Blackwell: London, 2011. [3] J. Asha, et al., Some unintended consequences of information technology in health care: The nature of patient care information system-related errors. Journal of American Medical Informatics Association, 11 (2004) 104-112. [4] B. Hemsley et al., (in review) Legal, ethical, and rights issues in the adoption and use of the personally controlled electronic health record ‘My Health Record’ by people with communication disabilities in Australia. Journal of Intellectual & Developmental Disability. [5] M. Dahm et al., (in prep). Information infrastructure and safe and quality care for people with intellectual and developmental disabilities living in supported accommodation in Australia: A scoping review and evidence synthesis. [6] B. Hemsley et al., (in prep). A conceptual review of research on digital Personal Health Records (PHRs) according to health literacy models and the WHO International Classification of Functioning, Disability, and Health: Informing a new research agenda for digital inclusion and person-centred health service delivery. [7] B. Hemsley et al., (2015). The Personally Controlled Electronic Health Record (PCEHR) for adults with severe communication impairments: findings of pilot research. Studies in Health Technology and Informatics. Vol 214. Available at: http://ebooks.iospress.nl/volumearticle/40075
Editor's Notes
- To date, there is little information in the literature to guide the provision of supports for people who use AAC to use personal electronic health (eHealth) records at home. Personal ehealth records are in digital form, accessible to the person, stored for ease of access and retrieval, for sharing with the person’s multiple health providers. In this paper we will: outline the rationale for using eHealth records by providing an overview of relevant research on consumer health informatics, health literacy, and legal and ethical issues related to the use of personal eHealth records, and present the findings of three studies aiming to investigate the barriers to and facilitators for personal eHealth record use by people who use AAC and their service providers. Implications for people who use AAC will be explored and discussed in relation to sociotechnical factors affecting participation in health technologies.
- In 2014, we obtained ethical approval of the Human Research Ethics Committee at The University and the organisations assisting with recruitment, to conduct this research on use of the personal eHealth records with people who have communication disabilities associated with: cerebral palsy, aphasia following stroke, intellectual disability, and traumatic brain injury. The aim of the three integrated studies was to investigate people’s views and experiences of personal eHealth records, so as to identify barriers and facilitators to using these and to inform future policy directions and future research. We based these studies on reviews of the literature on health information at home, in residential care settings for people with disabilities; legal and ethical issues relating to the use of personal eHealth records; and health literacy demands of these records. In this presentation an overview of the literature will be provided as a context to the studies presented, and the findings of the research will be discussed in relation to related consumer health informatics evidence base [1-3].
- How to combine these models to achieve person-centred integrated care through using effective and safe health information technology? A Combination of various conceptual frameworks is necessary to address unique situation in supported accommodation. Person-centred and integrated care + Health information technology Health IT needs to be “plugged in” with current “Information infrastructure”, which are the organisational and social structures that form the foundations for information management Infrastructural components exits among social regulations (e.g. policy, legislation, accountability), social relationships (e.g. between patients and the health care system, work practices), and within the technical domain (e.g. hardware, software, personally controlled health record) (Bansler & Kensing, 2010; Bjorn & Kensing 2013, Ellingson 2013)
- Study 1: This sociotechnical case study of a young adult with severe cerebral palsy who used AAC, involved observation of her interacting with her own health documents at home, and an examination of her storage and type of home health documents. She used a wheelchair for mobility and a speech-generating device to communicate with switch access control. Her health information was stored in multiple ways: as hard copy documents in an expandable file, and in the computer in a ‘documents’ folder and attached to emails. She required full assistance to access her health documents in the expandable file, but accessed the computer and Internet independently using assistive technologies, and could retrieve computer-based information independently. Her health information was not stored or organised systematically; there was some ad-hoc duplication between electronic and hard copy information; and there was no reference across sources to integrate elements of the information. This case study suggested that personal eHealth records could benefit people who use AAC, but that a range of supports may be needed to organise and prepare information for storage a systematic and integrated way [1] for improved retrieval and sharing across health providers.
- Study 2: We surveyed 12 adults with diverse severe communication disabilities (after stroke, cerebral palsy, brain injury) about using eHealth records (9 by face-to-face interviews and three by online survey). All participants lacked confidence communicating with unfamiliar healthcare providers and considered that eHealth records would help them by improved ‘storing’ and ‘sharing’ of health information that was important to them. As one said: “It is so tiring to continually explain my history and progress. Every meeting with a new health professional requires a lot of work for them to understand” (4). Further information is needed to determine whether the investment of time and effort by people who use AAC and their supporters in using eHealth records will see improved health information exchange when people with these disabilities meet with health professionals
- Study 3: We held five focus groups to discuss barriers to and facilitators for eHealth records by people with severe communication disabilities. Each focus group was 1 hour long and held at each participant’s workplace. The groups were audiotaped and transcribed verbatim with identifying information removed, and analysed for content themes. Participants in our pilot study were care workers in supported accommodation (n = 9), allied health clinicians (n = 5), parents (n = 2), medical staff (n = 2), and nurses (n = 6). Overall, the focus group discussions reflected diverse views and major content themes of: (a) barriers and facilitators; (b) benefits and limitations; (c) ethics, consent, privacy, and accuracy; (d) roles of carers and direct support workers; (e) advocacy and self-advocacy; and (f) health literacy.
- The results of our research shows that eHealth record use is not yet integrated into organisational policies for people with severe communication disabilities who use AAC. Key stakeholders, including people who use AAC and their service providers, are uncertain about how personal eHealth records would integrate, duplicate, overlap, or replace existing extensive documentation. While using personal eHealth records might benefit people who use AAC, there are many doubts, uncertainties and limitations put forward in the studies that both form and reflect barriers to the use of eHealth records by people who use AAC. It is not known whether use of personal eHealth records will replace the written information currently prepared for and provided to hospitals at admission. It is vital to match the time and effort ‘cost’ of using personal eHealth records with evidence of any benefits.
- How to combine these models to achieve person-centred integrated care through using effective and safe health information technology? A Combination of various conceptual frameworks is necessary to address unique situation in supported accommodation. Person-centred and integrated care + Health information technology Health IT needs to be “plugged in” with current “Information infrastructure”, which are the organisational and social structures that form the foundations for information management Infrastructural components exits among social regulations (e.g. policy, legislation, accountability), social relationships (e.g. between patients and the health care system, work practices), and within the technical domain (e.g. hardware, software, personally controlled health record) (Bansler & Kensing, 2010; Bjorn & Kensing 2013, Ellingson 2013)
- Further research is needed to inform policies and practices that will help to ensure the inclusion of people with many types of disabilities in using e-health record systems at home. Need to ensure that ‘adoption’ is followed by use and not by the ‘abandonment’ or dis -use associated with problems either with the process, people involved, or the e-health record technology.