Health information infrastructure in supported accommodation: Reducing risks, improving care quality, and informing implementation of Australia’s My Health Record for adults with disability
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AIHI Seminar, 16 August 2018, Macquarie University Prof Bronwyn Hemsley, Head of Speech Pathology, University of Technology Sydney Dr Mary Dahm, Centre for Health Systems and Safety Research, Australian Institute of Health Innovation, Macquarie University
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Health information infrastructure in supported accommodation: Reducing risks, improving care quality, and informing implementation of Australia’s My Health Record for adults with disability
- 1. Health information infrastructure in supported accommodation: Reducing risks, improving care quality, and informing implementation of Australia’s My Health Record for adults with disability Dr Mary Dahm, Centre for Health Systems and Safety Research, Australian Institute of Health Innovation, Macquarie University Prof Bronwyn Hemsley, Head of Speech Pathology, University of Technology Sydney @BronwynHemsley @DrMaryDahm AIHI Seminar, 16 August 2018, Macquarie University
- 2. ACKNOWLEDGEMENTS NATIONAL HEALTH AND MEDICAL RESEARCH COUNCIL FUNDING (PROJECT GRANT 2014 - 2018 Hemsley, B., Georgiou, A., Balandin, S., & Hill, S. (2014) Personally Controlled Electronic Health Records for Young Adults with Severe Communication Disability in Transition from Child to Adult Health Services. $390K Project Grant Associate investigators, Meredith Allan, Nathan Wilson, Shaun McCarthy, Isobel Higgins. Other investigators: Stuart Palmer. Research Assistants: Maria Dahm, Louisa Walsh, Megan Rollo, Lucy Bryant, Natalie Adams, Rebecca Smith.
- 3. Outline Health information infrastructure • How is health information communicated and shared in supported accommodation? Ombudsman case studies • What is the impact of health information infrastructure on the care and support available for people with a disability? Australia’s My Health Record - Legal and ethical issues • Which factors affect the implementation of the record in relation to people with a disability? Discussion - Where to from here?AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES
- 4. People with intellectual and developmental disability 4 • Live in supported accommodation (14% of people with severe or profound disability) • Live in long-term care facilities, including nursing homes, aged care hostels or group homes • Have complex health care needs = complex health information across multiple settings AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES © Nathan Anderson via unsplash.com • Two thirds of residents need help with communication • 99% need assistance to manage their healthcare and health information
- 5. How is health information communicated and shared in supported accommodation? • Evidence synthesis • Peer-reviewed & grey literature • Expert feedback
- 6. Conceptual model of the current health information infrastructure AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES
- 7. Impact on work practices and resident care • Information in supported accommodation is often stored in isolated silos • Existing policy at odds with actual practice Threatens continuity, safety and quality of care
- 8. What is the impact of health information infrastructure on the care and support available for people with a disability? • 8 Ombudsman NSW Reports (2004- 2015) • 99 case studies extracted • Directed content analysis • Was health documentation mentioned? • Which conceptual components are featured in the case study?
- 9. Was health documentation mentioned in the case studies? AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES 91 47 12 0 10 20 30 40 50 60 70 80 90 100 Case studies Percentage Documentation in Ombudsman case reports Featured documenation Documentation failures Best Practice
- 10. Which conceptual components are featured in the case study? 10 AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES 94 74 70 62 100 100 25 100 0 20 40 60 80 100 120 Coordination Communication Policy vs Practice Care Percentage Components of conceptual model Documentation Failures Best practices
- 11. Documentation failures 11 AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES Ombudsman report of reviewable deaths in 2010 and 2011
- 12. Who is include in health documentation processes? 12 AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES 93 83 11 9 100 100 33 83 0 20 40 60 80 100 120 Residental Staff Health staff People with I/DD Family Percentage People involved in health documenation Documentation failures Best Practice
- 13. Best practice – inclusive use of documentation 13 AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES Ombudsman report of reviewable deaths in 2008 and 2009
- 14. Impact on available care and support • Failures in documentation can contribute to fatal threats • Information sharing vs information integration • Failure to implement because of gap between policy & practice • Documentation can empower people with disability • Greater involvement of person with disability and their family in health information My Health Record as a solution ? © rawpixel via unsplash.com
- 15. Which factors affect the implementation of the record in relation to people with a communication disability? Legal & Ethical Issues Discourse in Twitter #MyHR #MyHealthRecord #PCEHR
- 16. 16
- 17. 17
- 18. The general public get to know it … #MyHR #MyHealthRecord #PCEHR
- 19. The general public get to know it … #MyHR #MyHealthRecord #PCEHR http://dro.deakin.edu.au/view/DU:30109918 Encouraging people to opt out Info on use and benefits
- 20. … address the e-health literacy demands Source: Monkman, H., J. Griffith, and A. W. Kushniruk. “Evidence- based Heuristics for Evaluating Demands on eHealth Literacy and Usability in a Mobile Consumer Health Application.” Studies in Health Technology and Informatics 216 (2015): 358–62.
- 22. AUSTRALIAN INSTITUTE OF HEALTH INNOVATION FACULTY OF MEDICINE AND HEALTH SCIENCES
- 23. … the info about MyHR online improves
- 24. … when content changes with the times
- 25. … people learn what the documents are for, how to make ACD, why/where to store
- 26. … when people become familiar with ePHR use
- 27. … when there’s User Centred Co-Design in Disability
- 28. Health literacy demands, and e-health literacy demands, will impact greatly on this population’s use of any shared e-health record system. The My Health Record has high health literacy demands. How can people access their legal rights if the information is not accessible to them? What can we do?
- 29. Older children are engaged in decisions about use
- 30. A.Capacity, Consent and Competence Issues Assessing Competence B. Privacy and Confidentiality Concerns Issues Pertaining to e-PHRs for Any Person Issues Unique to Children’s e-PHRs C. Conflicts of Interest CONCLUSION Legal & ethical issues for older children & MyHR
- 31. The parent or guardian of a person under the age of 18 is able to access and control their child’s MyHR as an “authorised representative” until the child reaches the age of 18 If, however, a child chooses to manage his or her own MyHR before reaching the age of 18, the Act provides that the child’s parent or guardian will automatically lose their status as an “authorised representative”. The child can then decide whether or not to allow the parent or guardian access as a “nominated representative” who provides assistance to the child in managing his or her MyHR in a supportive role. The caveat is that before allowing a child to manage his or her own MyHR, the system operator must be satisfied that the child “is capable of making decisions for himself or herself”. Notably, the Act does not provide any guidance as to the circumstances in which this test will be satisfied, or the age at which children should be considered capable of making their own decisions about the control and management of their health information. Parents and their older children / access
- 32. Guidance about a child’s competence to manage their own MyHR can be found on the MyHR website. - from the age of 14 a child will be presumed capable of making decisions about their MyHR. - Thus, from the age of 14, a child can register for MyHR without the consent of their parent or guardian. However, in relation to a child who has an existing MyHR, there is currently no prompt or notification provided to the child, upon reaching the age of 14, that they can take control of their MyHR. Rather, the child’s authorised representative remains in control of the child’s MyHR until some positive step is initiated by the child – or their parent – to change this. Parents and their older children / access
- 33. Secretary, Department of Health and Community Services v JWB and SMB, Deane J held: Pending the attainment of full adulthood, legal capacity varies according to the gravity of the particular matter and the maturity and understanding of the particular young person. Capacity depends on the gravity of the matter
- 34. With the move to a nation-wide opt-out system, children aged 14 years and over will be able to opt-out of having a MyHR, whereas children aged under 14 will need to either rely on their parent or guardian to opt them out, or opt themselves out after proving that they have capacity to make decisions about their own health. Children under 14 years / proving capacity (how?)
- 35. Typically, capacity assessments focus on the decision-making abilities about proposed medical treatment and procedures. ... The assessment required for MyHR would need to determine if the person. ... has capacity to access and manage his or her own MyHR but not necessarily to determine capacity to make a medical treatment decision. Capacity for health info management
- 36. the idea that it may be disempowering for children if the information contained in their e-PHR is known by their health providers appears to over- emphasise the stigma of certain health conditions at the expense of recognising the benefits of information about those conditions being known. … dignity of risk; dangers of stigma; benefits of info
- 37. Poor awareness and negative attitudes towards MyHR Better education is needed to address misconceptions. Initiatives to support the use of MyHR and resources for learning to do so should also be expanded to target older children. Encouragement by health professionals for young people to become more active in their health management Understanding the benefits and risks of children’s e-PHRs, including the capacity, privacy, confidentiality and autonomy issues that arise, will be central to the development of future policy in this area. … so what affects older children’s use of MyHR?
- 38. Communication Disability and My Health Record
- 39. The way both health and disability service providers implement MyHR could, through poor awareness, lack of knowledge, negative attitudes, or problems determining the person’s wishes and preferences, result in barriers to meaningful participation (impeding benefits) Healthcare recipients with communication disability need improved access to information about MyHR that targets their information needs. This needs to be in multiple formats or modalities, including brochures, media promotion, and multimedia videos to supplement written information. A right to better information about MyHR
- 40. - the potential benefits and disadvantages of MyHR - access to health care, inequity in health, and higher risk of adverse events related to the poor exchange of health information - how people will manage a record - deciding who needs a nominated or authorised representative and choosing one - exercising personal control over health information Ethical imperatives in Communication Disability
- 41. 41 Could My Health Record have a role here?
- 42. If … the general population gather around it. … it becomes more accessible to direct support workers. … discourse about it includes people with disability. 42
- 43. DISCUSSION Audience comments, questions, views, insights. Could the MyHR address the poor health information exchange surrounding people with communication disability? https://www.myhealthrecord.gov.au/about/my- health-record-statistics
Editor's Notes
- Health information infrastructure Developing a model to capture the communication, Co-Ordination and Integration of Health Information Ombudsman case studies Applying the model to investigate how health information storage, and access can impact on safety and quality of care and support on resident in supported accommodation Australia’s My Health Record Legal and Ethical issues
- 1/5 of Australian population has a disability (4.3 million) And of those 1/3 have severe or profound disability restricting their core activities of daily life including mobility, self-care, and/or communication 14% (n=188,300) lived in supported accommodation, long-term care facilities, including nursing homes, aged care hostels or group homes which may or may not be the best place for them Supported accommodation = 24-hour access to personal care and/or medical assistance Need help with communication Require assistance to manage their care and health information across hybrid care settings encompassing residential care, primary and tertiary care and allied health SO How is health information communicated and shared in supported accommodation?
- Scattered health information across GP, Hospital, specialists and allied health Conducted an Evidence synthesis to develop a model to capture the communication, Co-Ordination and Integration of Health Information Academic and grey literatures 286 sources (peer-reviewed n = 27; grey literature n = 259) Low number of peer-reviewed sources Scope of Grey literatures was limited to: national level to Australia (e.g. National Disability Strategy, 2010–2020 (Commonwealth of Australia; 2011)); at a state level to NSW; local/ organizational level by selecting one key government agency overseeing supported accommodation services within NSW (Ageing Disability and Home Care, ADHC). Most of the grey literature (66%) actual front line documents used to apply local/ federal or national policies Most sources focussed directly on documentation( 86%) =source itself was a document; when the source reflected that documentation was the major focus and discussed in detail (e.g. main topic, major finding); or when documentation was identified as a requirement in policy or procedures 14% indirectly = documentation was only a marginal topic (e.g. coincidental finding) or not discussed in detail. Thematic analysis to develop a conceptual model
- ‘People’ produce ‘Documentation’ which is often stored within ‘Isolated information systems’ and used in environments where ‘Gaps’ exist between ‘Policy’ (‘work-as-imagined’) and ‘Practice’ (‘work-as-done’). These gaps and isolated systems affect the ‘Communication’ and ‘Coordination’ of information within and across disability and health services and influence the ‘Care’ of people with I/DD living in supported accommodation ‘Communication’ relates to: (i) Sharing of information between people with I/DD, their family and support staff within the supported accommodation; and (ii) Information exchange within and across disability and health services. ‘Coordination’ relates to: (i) Integrating information within and across services, (ii) Sharing expertise, and (iii) Setting up work practices to facilitate effective cooperation of services.
- the continuity, safety and quality of care in such settings can be threatened because information in supported accommodation is often stored in isolated silos, People with I/D = systems are not well-integrated or person-centred and people with I/DD are often unable to access their own information = Passive bystanders Staff = Health/ English literacy limits understanding of documents or overarching guidelines/ policies Documents Isolated = not shared across services at all Isolated = not readily accessible where and when needed , e.g./ mealtime plan in a file in a locked office not in kitchen Isolated = not readily accessible where and when needed , e.g delayed discharge summary from hospital; Increasing number and complexity of policy and frontline documents = drowning by numbers (Increase of 80% in 20 years), only token accountability = documents distract from actual work = Excessive paperwork Continuity, safety and quality of care in such settings can be threatened because gaps exist between existing policy (regulatory documents describing work-as-imagined) and actual practice (work-as-done as evidenced in use of subordinate documents). Frontline documents: often did not follow overarching guidelines, were not used/ absent/ missing = were of dubious quality, were perceived by staff as administrative paperwork that interfered with other work practices. Staff question usefulness = burden to actual care delivery What is the impact of health information infrastructure on the care and support available for people with a disability?
- What is the impact of health information infrastructure on the care and support available for people with a disability? Applying the conceptual model to case studies published in the NW Ombudsman reports of Reviewable Deaths published In this study we examined case study reports on people with disability living in residential care in New South Wales (NSW), Australia to (a) identify threats to the quality of care and safety for this vulnerable patient group in relation to health documentation and information infrastructure, and b) evaluate the applicability of a conceptual health information infrastructure model.
- Documentation featured in 91% (n=90) of case studies, 47% (n=47) linked failures in documentation to risk of death, and 12% (n=12) described best practice use of documentation. Failures in documentation were linked to risk of death (e.g. a death from a fall after the person’s mobility plan was not followed) Best practice = portraying positive health information practices in the care for people with disability
- Case studies linking failures in documentation to risk of death of a person with disability Coordination (94%, n= 44) including documentation not being followed or not implemented (n=38), Communication (7%, n=35) including inter-service communication between residential and health services (n=27), Quality of documents (70%, n=33), notably missing documents (n=18), discrepancies between Policy and Practice (70%, n=33) and Impact on Care (62%, n=29). ‘Best practice’ case studies Care (100%, n= 12), linked with successful communication and coordination; Communication (100%, n=12), including best practice in communication across services (n=10) and within services (n=8); Coordination (100%, n= 12), and Policy vs Practice issues (25%, n=4), related to work-as-done.
- A common theme across the case studies linking failures in documentation to risk of death was the ack of coordination and communication between health and disability services. Even with successful inter-service communication (e.g. recommendations being relayed between health and disability services), care was still at risk in situations where work-as-done did not align with work-as-imagined. Although mandated by policy in most residential care environments, entry screening tools, individual plans, or health plans for residents and incident reports were often missing, outdated, incomplete or not completed Missing incident reports precluded near miss events from being analysed sufficiently to help provide targeted preventative measures 18. Case study 11 18 focused on a resident who died after choking on a piece of fruit. Her mealtime plan prescribed a “mash consistency” diet. Two months earlier staff had documented a similar incident, but did not complete an incident report, or write and implement a follow-up risk management plan.
- Case studies linking failures in documentation to risk of death of a person with disability mentioned staff (n=93%, 44) and health services (n=39, 83) most often, and people with disability (n=5, 11%) and their families (n=4, 9%) infrequently. ‘Best practice’ case studies referred to staff (n=12, 100%) and health services (n=12, 100%). However, families (n=10, 83%) and people with disability (n=4, 33) also featured, and more frequently than in cases describing documentation failures.
- Best practice studies described how successful communication occurred between health and residential disability services and included the person with disability and his/her family. Reportedly, this facilitated appropriately integrated and coordinated care improving the safety and quality care for people with disability, especially at the end of life. These aspects of best practice cases were illustrated in Case Study 24 17. The resident was diagnosed with lung cancer after the disability service identified changes in her appearance and behaviour and referred her to a General Practitioner (GP) who ordered further tests. Both the health and disability services included the woman and her relatives in treatment discussions and co-operated to discuss accommodation options for her changed support and palliative care needs.
- failures in the health infrastructure components can contribute to fatal threats to the safety and quality of care for people with disability living in residential care. Even if vital information about residents is communicated between service providers, health or disability staff may not consider or may ignore this information. Thus, it is not only a matter of adequately using documents to record risks, plan steps, and communicate risk reducing measures, but also crucial to implement appropriate actions in a timely manner to reduce these risks. Threat to tick boxes of prohibiting policies or service cultures Services cultures relating to providing personalised care can create tension between 18 (a) enacting a duty of care responsibility as prescribed by policy, and (b) promoting resident 19 involvement, autonomy, and independence; a practice that might contradict care plans written 20 in line with policy Best practice cases reflected the need for substantially greater involvement of the person with disability and their family members in health decisions. Involving patients and their families in managing their health information could improve quality of care. To achieve this, residents with disability, particularly people with I/DD, require additional communication support 33 and health information to be available in accessible formats Which factors affect the implementation of the record in relation to people with a disability?
- Thank you very much for attending this session. Please feel free to contact me if you would like to discuss these issues further.