Co-design feedback from people with intellectual disability when using My Health record
Three people with intellectual disability (ID) chatted to a doctor about the My Health Record ‘Personal Health Summary’ section.
People with ID are often not included in medical research yet have higher rates of health needs than the general population.
ID refers to a deficit in cognitive ability and functional performance due to an intelligence quota of 70 or below on psychometric testing. The deficit is present before 18 years of age. People with ID experience higher rates of:
- co-morbid diagnoses
- trauma and sexual abuse
- physical impairments limiting service access or appropriateness
- behaviours of concern
- environmental sensitivities
- routinely have fragmented care provision
A person with ID, like any healthcare consumer, should have a role in planning their care. They may be constrained by limited capacity in certain domains buttheir ‘voice’ needs to be heard. General public health measures can paradoxically widen inequalities in health care provisions for people with ID because of their different health profiles and patterns of disease.
This case study of 3 participants with ID) was purposefully designed to engage the My Health Record end-user and capture their feedback. Co-design principles were utilised. The information gained is shared below with the intent that there may be future collaboration on similar projects aimed specifically at improving health literacy, fostering self-determination, and promoting user confidence in healthcare settings.
Implementation science techniques were used to evaluate how the My Health Records Personal Health Summary section was received and if the interviewees would feel comfortable using the portal. An Easy Read booklet was created and given to the participants prior to the session, to enhance their understanding, knowledge and engagement in the focus group.
Focus groups are a recognised beneficial data collection method for people with ID, a semi- structured approach allows the person to be active participants; and encourages those who may otherwise have believed they have little to contribute to instead participate. With respect to how heterogeneous the intellectual disability community is, three participants with intellectual disability of varying backgrounds with differing biopsychosocial and health literacy abilities were invited to participate.
Discussion began by talking about participant comfort levels with doctors; who might view their My Health Record; when it might be used and how they might complete it.
When discussing their relationships with primary health care professionals, all participants felt that having a strong connection and relationship with their General Practitioner was important. They identified that being listened to made them feel heard and respected; “he was aware I had an intellectual disability, but he didn’t judge”, “she listens to me, she asks me lots of questions”.
If the person with ID was able to include or chose support people to be present (during medical interactions), the participants felt this was anopportunity to enhance consumer comfort “he asked my mum so that he didn’t touch me anywhere that might hurt me”.
The My Health Record was unanimously seen as a helpful opportunity in communicating the participant’s health knowledge, particularly if unable to communicate in an emergency situation, like being in a hospital emergency department. One participant was aware of the excellent health documentation “passports” already available and others that are under development. This participant thought that having a My Health Record would be helpful if they were to forget their hard copy of a hospital passport documentation given the My Health Records online presence.
People with ID have difficulty accessing and interacting with primary health care services due to the service’s delivery design. The environmental design, staffing and accessibility to quality resources for people with ID are often inadequate in mainstream healthcare delivery models.
People with an ID are hospitalised at 6 times the rate of those without an ID. Due to communication difficulties and fragmented care provisions, people with ID present for medical review later and with higher rates of complications. Dismissal of overt ill-health can occur due to attribution of symptoms to the person’s comorbid intellectual disability.
Completion of the My Health Record independently was considered a goal but that support people may need to assist, “I wouldn’t be able to do it on my own”. One participant noted they’d prefer to ask a family member with a health background to assist them to ensure accurate information was entered, another noted that they felt able to complete it independently as “mine would be simple and boring so yes”.
When designing programs to enhance the delivery of care to people with ID, it is imperative to include them and their care support network in the dialogue. “Empower” was a word, identified by all 3 participants, of importance during interactions with health professionals.
Participatory action research aims to empower the user by utilising their reflections on the intervention. As the rest of our healthcare ethos shifts from paternalism to co-design and autonomy, so too should the dialogue for people with an ID, their support networks and hospital workers. Collaborating with end-users in the review of the My Health Record allows a glimpse of the benefits and considerations required when working with People with ID and the My Health Record.
Additional Advice and Comments
The difficulty in supporting self-determination and autonomy whilst enabling general disability and a universal level of service delivery needs to be acknowledged.
Those participating were compensated (financially) for their time.
Formal ethics approval was determined to be unnecessary according to The Local Health District’s Research Ethics and Governance office.
Out of respect to those interviewed, their feedback is captured verbatim. Identifying details have been anonymised.
Thank you to Jen Cush of Community Disability Alliance Hunter for her assistance.
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