Appendix C: Workshop discussions

Bipolar workshop
Key Issues / Challenges / Strategies / Other
Table 1: Governance and Ethics
  • Data Protection
  • Governance Structure
  • Ethics
/
  • Accessibility to record
  • Definition of who has access
  • Degree of confidentiality
  • Consent
  • Accountability
  • Who owns the record?
  • Who can release the record to parties?
  • Who requires the information?
  • Consent vs. duty of care
  • Capacity
/
  • Strong DP structure in place, within EHRs
  • Patient driven, public consultation
  • Education of the public regarding measures in place (media highlight breaches only)
  • Compliance with HIQA IT & DP standards
  • In terms of ownership and accessibility, a much bigger forum is required to discuss this issue. We suggest getting all stakeholders together in order to decide who determines ownership and access to records
  • Legal framework
/ Long discussion regarding ownership and access. Who grants access? Who decides what part of the EHR is accessible?
Table 2:Consent, usage and confidentiality limits
  • Invasive technology – “big brother”
  • What benefit are wearable technologies to patient?
  • What happens to data?
  • Reassurance
  • Data Protection
/
  • Security issues with paper
  • Anonymity
  • “Every speaker” closed Facebook
  • Consent – give / withdraw
  • Consent – mental health
  • Legal implications
  • Health Insurance
/
  • Testing
  • GOMO (behavioural technology)
  • Look at other countries (USA)
  • Telephone and video
  • Educate at start of project
/
  • Responsibility to follow-up
  • Impact of mood
  • Design of consent (Broad or narrow)
  • Ethical approval of consent forms if process is under-developed

Table 3: Service user perceptions and expectations of the EHR
  • Key information at point of care
  • Consent during mania / hypermania
  • Access to care plan
  • Self-monitoring – what is the cut-off for intervention?
  • Medication monitoring
/
  • Consent
  • Key information
  • Scaling pilots
  • Specific issues in context
  • Linking existing information
/
  • Identifying information
  • Portal
  • Cloud-based
  • Access to information on-call
  • Defining use cases
  • High need/high use service users will have wider EHR content
/
  • No specific BPAD issue of EHR

Table 4: Clinical engagement: general practice and nursing expectations of the EHR
  • Business rules and practice
  • Who has access to it?
  • Informed consent
  • Early engagements
  • Appointment – mood records
/
  • Education of illness
  • Evolution of care in ages of patients
  • Accessible for all ages
  • Medication management
  • Security access
/
  • Electronic health record / clinical uses
  • Key information being given
  • Video or text interactions
  • Support via patients

Table 5: IT challenges and online security
  • Confidentiality opt-in
  • Health Information Bill
  • Interoperability issues
  • Open EHR workshop
  • Usability and adoption
/
  • Data to the right people at the right time
  • Linking apps to clinical
  • Alerts to carer
  • Should we alert?
/
  • Enabling carers
  • Telemedicine
  • Very simple to use engagement

Haemophilia workshop
Key Issues / Challenges / Strategies / Other
Table 6: How do we ensure eHealth solutions address the correct problem?What are the service user perceptions and expectations of the EHR?
  • Integration to national system
  • Unique QR of patients
/
  • National system siloed by disease
  • Specific clinical systems
  • Data protection
  • Policies in place need to be revised
/
  • Engage hospital managers in addressing the challenge of integration
  • Linking clinical to the treatment of patient
  • Web access to the national haemophilia system
  • Linking to different systems
/
  • National guidance
  • GP link is key (shared care model)
  • Other chronic diseases (diabetes)
  • Wearable devices to anticipate chronic disease events
  • Big data analytics
  • Patient involvement to support anonymous research
  • Involve policy makers

Table 7: How could service reconfiguration improve the quality and efficiency of care provided?What are the principal IT challenges around delivering this project?
  • Integration engine
/
  • Patient identifier
  • Data model for clinical and patient information
/
  • Integration engine avoids multiple interfaces
  • Data models for haemophilia and genome requirement
  • Consent to information
  • Poll existing services
  • Supporting ambulance service for haemophilia
/
  • Identifying patient data sets
  • Put patient at centre

Table 8: How can an integrated health system improve care of PWH in emergencies?Is there a theory or model of implementation that explains this successful development and adoption of the Haemophilia solution? If so, is it applicable to other chronic diseases?
  • Integration to National systems
  • Unique identification of patients
  • Data protection – e.g. Crumlin and Temple street can’t do index sharing
  • Policies in place sometimes behind what is happening
/
  • How to scan haemophilia products in other hospitals outside NCHCD – e.g. can blood track recognise the Haemophilia products?
  • Link to lab systems and other national systems
  • National systems silo’d by disease (specific clinical systems)
/
  • Engage hospital mangers in addressing the challenge of integration and realisation of the benefits
  • Web access to the national haemophilia system across the country
  • Learn from tracking of animals (vaccines, diseases etc.)
  • Joined up thinking
  • Build linkages to different systems
  • National guidance / leadership /policy makers
  • Need GP linkage – better integration with GP system, development of shared care model
  • IOT – use of wearable devices to anticipate care interventions (Big Data analytics)
  • Patient involvement to support research

Epilepsy workshop
Key Issues / Challenges / Strategies / Other
Table 9: What is the best model for delivering the genomic interpretation for each participant?
  • Where to generate sequence
  • Where to interpret
  • Consent for research
  • EPR functionality
  • Cost
/
  • Cost/capacity sustainability
  • Capacity to interpret sustainability
  • Capacity to capture nature of consent
  • How much functionality?
  • Short term vs. long term
/
  • Outsource vs. local capacity
  • Build on existing pipeline. Conscious of available packages
  • Capture for research and re-consent
  • Focused on guidelines ESHE (ASHG)
  • Describe value of research component in medium and long-tem

Table 10: How do we ensure ehealth solutions address the correct problem?What are service user perceptions and expectations of the EHR?
  • Talk to people
  • What is an ecology?
  • What is a landscape?
  • What is an interest?
  • Issue is not technology
/
  • Very efficient forces in ecology
  • Consent
  • Access
/
  • Flexibility
  • Big data and personal
  • Very different needs may require very different solutions

Table 11: How can ehealth promote/facilitate patient-centred care?How can we keep an eye to the horizon so that we are designing future -proofed health services?
  • eHealth may facilitate
  • appointments
  • information
  • value for money
  • medication reconciliation
  • drug-drug interaction
/
  • Confidentiality
  • Privacy
  • Access – who can view the record, roles and responsibilities, levels of access
  • Portability
  • Investment
  • Technophobic HCPs
  • Lack of leadership
/
  • International evidence
  • Change GP model , change system
  • Anthropology, human behaviours
  • Implementation incentives
/
  • Many issues to be addressed – patient portal

Table 12: Is there a theory or model of implementation that explains this successful development and adoption of an ehealth solution? If so, is it applicable to other chronic diseases?What pre-planning or pre-implementation research is needed prior to facilitating people with epilepsy direct access to the EPR?
  • Does integration impact on outcome?
  • Does the IT solution follow the work flow?
  • Is it flexible?
  • Not re-inventing the wheel
  • One capital investment
  • Facilitating stakeholders
  • Integration
  • Standardisation
  • Common vision
  • Recognising modern environment
/
  • Silos of care
  • No linkage between data sets
  • Recognising value
  • Paper based records
  • Unique identifier
/
  • Referral to Healthlink
  • Solutions need to be tried and tested
  • Organisational governance
  • Collaboration

Table 13: How could service reconfiguration improve the quality and efficiency of care provided?
  • Feedback from patients
  • Time consumption of personal records
  • Volume of past historic information
  • Compassion of HCPs
/
  • Information is available for patients but impossible to access
  • Diaries are hard work
  • Improving consultations
/
  • Most useful function of EPRs is list of medications taken, reactions etc.
  • Diaries need to be designed for ease of use (drop-down menus etc.)
  • IT can improve consultations – prior questionnaires
/
  • Standardised consultation forma may be helpful; compassion essential

Table 14: What are theprincipalIT challenges around delivering this project?
  • Define an appropriate set of patient record data to share with patient
  • Appropriate level of support for patients to access patient portal e.g. if patient queries data in their record
  • Ensure the app is intuitive for patients
  • Data security and confidentiality
  • Linkage with GP
  • Ensure the clinicians have the capacity to absorb new information from the patient
/
  • Different types of patients with different expectations
  • Extra burden on clinicians?
  • Appropriate level of resources required to support the rollout of patient portal
  • Avoid white elephant
  • Balance ease of use with depth of appropriate data
  • Ensure GP is in the communication loop
/
  • Have very close engagement with patients
  • Identify level and type of resources required
  • Patient engagement from the start
  • Learn from prior approaches to developing patient portals
  • Implement proven best practices
  • Healthlink
/
  • Ensure the portal is of value to the patient
  • User experience workshops
  • Interactive approach to app development including patient input