1. Health Data in Children with Complex Care
Needs: Role of the Patient Summary
MOCHA-Trillium II Workshop
21/11/18- 22/11/18
Maria Brenner, Michael Rigby

2. Children with Complex Care Needs
…multidimensional health and social care
needs in the presence of a recognized
medical condition or where there is no
unifying diagnosis.
They are individual and contextualized, are
continuing and dynamic, and are present
across a range of settings, impacted by
healthcare structure. (Brenner et al. 2018)

3. 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Long-term ventilation
Intractable Epilepsy
Traumatic Brain Injury
60.9
52.2
34.8
39.1
47.8
65.2
%
Can identify all healthcare providers Cannot identify all healthcare providers
Identification of all healthcare providers

4. Individuals consulted in the development of a personalised
care plan for an adolescent with a TBI
50.0
53.8
57.7
42.3
26.9
30.8
7.7
19.2 11.5
0
20
40
60
80
100
120
The adolescent with TBI (where cognition allows) The adolescent's parents / guardians Members of the healthcare team
%
Yes No Missing response

5. Key Data Issues

6. Key Data Issues

7. Key Data Issues

9. Autonomy Issues in Child Primary Care
MOCHA-Trillium II Workshop
21/11/18- 22/11/18
Maria Brenner, Michael Rigby

10. Can a Child Request Sight of their Record?

11. Can a Child Restrict Parental Access to their Record?

12. HPV Consent ConflictCountry If girl requests immunisation but parents
refuse consent, can the girl be immunised?
If the parents request the immunisation, but the girl objects, what happens?
Yes No
Austria Yes, depends on her
age
parents together with the doctor can over-rule the child`s until the age of 14
years
Bulgaria No Discussion
Cyprus No She will receive it.
Czech Republic Yes health services can be provided to a minor patient on the basis of his or her
consent, provided that such an act is commensurate with his or her reasoning
capacity and maturity.
Estonia No No immunization.
Finland Yes No immunization if the girl is mature enough to make the decision
Germany Yes No immunization if the girl is competent to make a decision.
Greece No The paediatrician will try to talk her into it
Iceland No Depends, has to be negotiated.
Ireland No, If the girl is under
16 years. Once the
girl is 16 years of age,
she can consent.
In theory, the girl could be vaccinated once her parents have consented, but in
practice this would be highly unusual
Italy No
Latvia No Parents determine the child's treatment / prevention plan
Lithuania No Until children’s 16 years of age parents have a right for a final decision
Netherlands Yes I don’t see a doctor forcing the child to get an immunization.
Norway No
Poland No Decision is undertaken by the court.
However, in practice, the doctor may refuse the vaccination procedure.
Portugal Yes
Spain No From the age of 12 years, the child is legally able to express her refusal to be
vaccinated.
Sweden No She would not be immunised.
UK Yes No immunisation given
Total numbers Yes
7
No
13
Immunized Not immunized Discuss / court
4 7 4

13. Fundamental Rights Agency
Maps 14 ages of key rights, by country, including
Age requirements and health
• Consenting to medical treatment without parental consent
• Requesting euthanasia
• Seeking medical advice without parental involvement
• Accessing reproductive or sexual health services
• Accessing abortion services
• Purchasing and consuming alcohol
• Purchasing and consuming tobacco
Children in the digital world
• Consent to disclose data on children
• Consent to use data on children

14. Fundamental Rights Agency

15. Vulnerable…?
“So many categories of people are now considered vulnerable that virtually
all potential human subjects are included” (Levine et al., 2010, pp. 46)
“The concept of vulnerability is a relational one. That is, it concerns the
relation between the person or a group of persons and the circumstances or
the context. It is closely related to the situation under analysis. It is not a
category or a label we can just put on.” (Luna, 2009; p.129)

16. Focus on Capacity to Engage
A person lacks the capacity to make
a decision if they are unable:
• To understand the information
relevant to the decision
• To retain that information long
enough to make a voluntary
choice
• To use or weigh that information
as part of the process of making
the decision, or
• To communicate their decision
A person should not be said to lack
capacity if they:
• Require information to be explained to
them in a way that is appropriate to
their circumstances
• Can only retain the relevant
information for a short period of time
• Did lack capacity for a particular
decision at one time but may no longer
lack capacity to make that decision
• • Lack capacity for some decisions but
have capacity to make decisions on
other matters
(Assisted Decision-Making (Capacity) Act 2015)

17. Conclusions
• There is no universal policy age of decision making
• Many functions are based on set age
• In health child grows incrementally, personally
• MOCHA looks at health from an individual child-centric
holistic basis
• Assisted Decision-making looks at older person individually
- is there a need for a child equivalent?

18. Thank you.