Although I am a big fan of transparency and shared decision-making with patients and families, I admit that the medical profession as a whole can still improve in this regard. For instance, children with medical complexity (CMC) usually have a care plan, which is a written document of the child’s medical issues, medications, and goals for care. Even though the caregivers are the ones who know the child the best and are generally doing most of the care for the child, care plans are generally written by health providers, and caregivers often have very little input into the care plan.
Thus, when I saw an article by Dr. Clara Moore and colleagues from University of Toronto and University of Washington, I said to myself, “Why has nobody done this before?” The article is entitled, “Caregiver and Care Team Perceptions of Online Collaborative Care Planning for CMC,” and it and an accompanying video abstract are being early released this week in Pediatrics (10.1542/peds.2024-065884).
The concept is simple: Caregivers of CMC were given online access to their child’s care plan on a secure, HIPAA-compliant platform, and they could make comments and edits to the care plan and share it with others (other family members or health care professionals), just like they would with any shared online document. The authors then interviewed caregivers to ask them what they thought of this way of creating the care plan.
Authors found several common themes:
- Trust: Caregivers, in general, made fewer edits than anticipated. This may be because many caregivers did not trust themselves to edit the care plan, because they worried that they might make an edit that could negatively impact their child’s care (e.g., an incorrect drug dose), and this concern was also expressed by medical team members. However, many caregivers did want to be able to identify needed changes to the care plan, so that they could let the medical team make the change, or wanted to know about any changes that were made by the medical team. A “verification” system was suggested, where information added by a caregiver is reviewed by a healthcare provider, who then presses an “accept” button to allow these changes to be incorporated.
- Responsibility: The online care plan was seen as an additional responsibility and burden for caregivers. While caregivers appreciated the ability to give input into the care plan and felt that this demonstrated that the medical team recognized them as equal care team members, they said that caring for the child took priority over reviewing the online care plan.
- Access: Caregivers and care team members both appreciated that the online care plan was easily accessible, especially in emergencies. Caregivers particularly liked that they could access the care plan on their phones.
- Autonomy: Caregivers felt that the online care plan gave them more autonomy over their child’s care. Both they and the care team members appreciated that this allowed everyone to be on the same page.
While the comfort level among caregivers and care team members will differ, providing caregivers with the option to provide input and have easy access to these care plans is an important positive step in improving communication, increasing autonomy and partnership, and enhancing care for the child.
