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Idea Consolidated health records for all children and youth in foster care

By Soori Kani | 12 Dec, 2014

Idea submitted by: Soori Kani

Initiate programs and policies to ensure that health information for foster children is shared more effectively among foster-parents, social services professionals, court system, and healthcare providers as children move through various care situations. Given the complex social and physical/mental health issues of children and youth in foster care, combined with the degree of shifting in placement and caregivers they experience, care coordination is exceptionally challenging for this vulnerable population.

The children and the foster care system have a lot to gain by engaging stakeholders to improve coordination through use of health IT solutions and services that facilitate communication and electronic up-keep of foster children’s health and well-being information.

The initial planning program will evaluate several areas including: current and past efforts aligned with this objective, impact of diversity in population composition and geographic areas, access to technology (mobile phones, computers, software applications, etc.), and challenges associated with the non-traditional access requirements due to frequently changing and extensive number of responsible parties.

The result of the program will be identification of required policy development or changes, options available and best practices for implementation, and a general blueprint and customizable process for states, counties, and municipalities.


Joaquin Blaya, PhD Advisor Replied at 9:18 AM, 13 Dec 2014

I know very little about the foster care system in the US, but usually the biggest challenge to implementing information systems that have information and coordinate care across many different institutions. How does the current foster care system store and transmit information across the many institutions? Are there policies in place that this should happen and therefore and IT system would help in ensuring those policies where met?

Soori Kani Replied at 8:49 AM, 15 Dec 2014

Thank you for your questions Jaoquin. My direct experience with the foster care system is limited to a volunteer orientation session a couple of years ago for becoming a Court Appointed Special Advocate in Fairfax, VA. So I am not an expert on the foster care system myself, but as someone who has helped coordinate national-level (federal) health IT efforts, I think this issue has the markings of a great candidate for a national effort.

To answer your question regarding the method for information exchange today, the sharing of health information for foster children, when it actually happens, is mostly a manual process and is done through paper records. Although care coordination for the children and youth in foster care can be vastly improved through transition from paper to electronic records, the need for a central coordinating effort addressing all children in foster care has not been evaluated by any project that I am aware of.

As for current policy requiring the use of electronic records for care coordination of foster children, a national policy doesn’t exist. We need to leverage lessons learned from great work already done for a few states, determine what works best, and mobilize state advocates to impact policy at the local, state and national level.

Soori Kani Replied at 7:17 PM, 16 Dec 2014

Joaquin, Given that a key component of this idea is the technology solution that would improve care coordination, let's agree to have two discussion threads, one on technology and one on policy with the understanding that we need to work on both fronts in parallel.

For the sake of argument, lets assume that Meaningful Use requirements provide adequate policy incentive for electronic health records for medicaid providers catering to this population. We will consult with the experts working on foster care policy to better understand what policies are in place and what we hope to see in the future. For policy to take shape, we need to demonstrate evidence, cost savings, etc.

On the technology solution front, I like to see if we can leverage best practice solution(s) to help facilitate improved care coordination for foster kids. We need our foster care and technology experts to develop a solid set of evaluation criteria, and assess current solutions against the criteria to identify the one(s) that best meet requirements. Will there be a more personalized PHR (as David Bates put it) that fits the bill here, or Open Notes, Social, Mobile, Cloud, an App or a combination thereof? Do you have any suggestions on how to poll the community to come up with the initial solution list?

Om G Replied at 3:21 AM, 21 Dec 2014

As a former foster care kid, I can tell you that the need exists for some kind of coherent tracking mechanism. This population often has pertinent records across various organizations and jurisdictions making it a challenge to keep the health records coordinated with the social services records. It is not uncommon for children in foster care to not have a consistent health care provider and for the record to mostly resolve around compliance with school requirements. The feeling I had was of no consistent advocacy for my health and no sense of ownership. There may be an element we should consider that includes the record keeping as a resource for the child to record emotional experiences and act as an anchor for the foster experience. I know that I developed a strong tendency to 'tough it out' that is still with me today, accompanied by diligent involvement in the health care of my child.
Having something that tied together the variety of different practitioners and social workers that reflected my own feelings would have helped me to feel less disjointed and alone. In that respect, social does have a potential role to play in offering a means for children to express themselves to those who are supposed to be watching.
An electronic record will help portability and thereby ensure that any new care providers will be better informed of the big picture more quickly. The tendency would be to leave it at that. The current paradigm looks at the issue from a paper perspective as well. Electronic records offer the capacity to include photographs, video, artwork, Journaling, along with the medical and psychological information. This memory bank, if you will, is part of what an actual parent holds in their memory and heart.

A/Prof. Terry HANNAN Advisor Replied at 6:46 AM, 21 Dec 2014

Om G, what a wonderful posting of an "experienced" person. You are the ideal "bridging person" that informatics seeks between the technical informaticians and the 'end-user"
It would be very interesting to see if you could list/define a "dictionary of concepts" to cover the fostering domain which could be incorporated into an "e-record".
For adaptable "e-records" the concepts become the basis for "knowledge representation" which is the foundation for CDS and the formulation of a longitudinal record of a given individual.

Soori Kani Replied at 4:29 PM, 21 Dec 2014

Thank you Om G for bringing the voice of the key stakeholder for this idea into our discussion. A combined e-record reflecting the different aspects of foster kids' lives, with the flexibility for the children to participate, is indeed an ideal solution. And therefore, a more appropriate title for this idea is "Consolidated care record for all children and youth in foster care" instead of "Consolidated health records...".

Professor Hannan, thank you. You have given us a great starting point by asking about the dictionary of concepts that would be the foundation for the future longitudinal record for foster care children. Would you please share your thoughts on how to best go about leveraging existing solutions dealing with the same concepts (i.e. adolescents mental and behavioral health)? I don't mean to put the cart before the horse, but given the price of another delayed solution in terms of the children's wellbeing and future, and funding limitations we will most likely face, I propose this as a tenant of our discussions.

Om G Replied at 11:26 AM, 22 Dec 2014

Terry, Saori,
The Electronic Health Record schema can remain intact if we add the child as a 'Specialist' providing ongoing support and insight on the 'patient'. The system is well suited to add social workers and foster parents in the same manner but I'd find arguments to not include them in the same manner but allow their input through the mental health practitioner reports.
There would need to be developed an avenue for wider access via 'alternative' input methods besides point of care edits.
This lends itself to a cloud based system, perhaps with a physical encrypted key (card based or USB stick) for access control.
Cloud also eliminates redundant development and jurisdictional conflicts.
In thinking about it further, I like the anchoring aspect even more. Of course, the child would need to have a realistic sense of 'ownership' and be involved with how/when the information is accessed.

Soori Kani Replied at 12:34 PM, 22 Dec 2014

Hi Om G, adding a child in the EHR as a specialist is an interesting idea but may not be as portable. Why not use a PHR that would include the EHR data and give the children a place to add their notes? I haven't quite wrapped my head around the concept of the child as the owner of the record, but I like the idea of designing this to gradually increase the children's involvement so that by the time they leave the foster care system, they are prepared to take ownership. I would love to speak with you about this.

On another note, cloud can be a great choice, especially that with the appropriate security controls and deploying the right solution for care coordination, it can bring everyone (children, doctors, teachers, advocates, foster parents, court system, etc.) together in an agile manner.

Soori Kani Replied at 6:51 PM, 21 Jan 2015

Hi everyone,

I appreciate all of your feedback on this topic. Please let me know if you are interested in continuing offline.

Om G, I am especially interested in the unique perspective you provide, and would like to further discuss the concept of the " record keeping as a resource for the children". Can we please connect offline?

Thank you all.

This Community is Archived.

This community is no longer active as of December 2018. Thanks to those who posted here and made this information available to others visiting the site.