Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

Does the implementation of a free standing personal health record for children with special health care needs improve: 1) clinical outcomes, 2)care coordination, 3) communication with providers and decrease cost of care and ED and hospital utilization when compared to the use of a written care plan.

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

We would like to compare the use of a free standing PHR (not linked to an EMR)to the use of a written health care plan. Both the PHR and the written care plan would contain key elements such as the list of medications, problem lists, contact information for providers, a medical management plan and an emergency plan. The PHR however will also contain clinical results, consultation notes from specialists, and tools for self management.

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

We are hoping to target children with special health care needs ages 1 month to 18 years old who have complex conditions requiring the involvement of multiple specialists at a pediatric tertiary care center. We have developed a set of ICD-9 codes to define this population and can identify them through administrative data bases. We will include both English speaking and Spanish speaking subjects and we will provide lay facilitators to arrange internet access and address issues of computer and health literacy.

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

We are particularly interested in our ability to reach Spanish speaking families and families with minimal computer and health literacy.

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

1. Improvement in clinical outcomes
2. Improved care coordination
3. Improved provider-patient communication
4. Reduced utilization of the ED and the hospital

Describe any health-related risks, side effects, or harms that you are concerned about.

We believe this proposed project has minimal risks, side effects or harms.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

yes

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

• Arthritis and nontraumatic joint disorders
• Cancer
• Cardiovascular disease, including stroke and hypertension
• Developmental delays, attention-deficit hyperactivity disorder, and autism
• Diabetes mellitus
• Functional limitations and disability
• Pulmonary disease/asthma

AHRQ Priority Populations

• Low income groups
• Minority groups
• Children
• Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

• Medicaid
• State Children's Health Insurance Program (SCHIP)

Importance

Describe why this topic is important.

Previous research has documented that children with special health care needs and who have complex conditions receive poorly coordinated care, have sub-optimal communication with their provider and are subject to both inappropriate over-utilization and under-utilization of health care services. A free standing PHR has the potential to improve these outcomes through improved information sharing of both medical information and patient centered information, enhanced communication with the provider and the continuous customization and improvement of the care plan. There is however a dearth of research documenting the impact of a PHR in this population. A randomized controlled trial comparing the PHR to a written care plan would provide important information as to the value of this technology and would aid in the planning for implementation of the PHR.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

Our children's hospital has recently joined with Google Health to make a PHR available to our patients. Currently we have a network for primary care safety-net programs who are interest in implementing the Google PHR and who receive their tertiary care exclusively from our children's hospital. Fortunately 80% of these clinical sites have an EMR that has an already built interface to Google Health. We feel that our network and the relationship with Google Health offers a unique opportunity to evaluate impact of a PHR on health outcomes in vulnerable children with complex conditions. We also felt that this research will address an important knowledge gap in the field as to effectiveness of a PHR on key health outcomes.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

We are currently experiencing the rapid development of both free standing and EMR linked PHR's. While their potential to improve health care outcomes is considerable, there is little research documenting their success in improving outcomes. It will be important for both clinicians and policy makers to have documentation of the effectiveness of this technology prior to investing resources and time into their development and implementation.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

The development of a free standing personal health record in our institution is a pilot project. In order to justify the continued support of this program in both time and resources we need to document a positive impact on the value of care we provide to our patients. This will include both the impact on clinical outcomes and the cost of care. This project will also help us answer the question of whether or not it is possible to create work flows with PHR's that will allow us to reach vulnerable families with health and computer literacy concerns. It is our hope that the results of this study will be generalizable to other pediatric settngs and organizations.

Describe the timeframe in which an answer to your question is needed.

We are currently conducting preliminary qualitative research with our target populations as to how to most effectively use a PHR to improve their health care. We are also currently identifying our population from billing data from the sole medicaid provider in our county the Health Plan of San Mateo. Additionally we already have a functioning coalition of safety-net providers in our county that has experience collecting and analyzing data with respect to the provision of the medical home. We are hopeful that with all our preparation we will be ready to hit the ground running if funding should become available. We anticipate 6-9 months to recruit staff and pilot test our measures and to have the study in the Field for 12-15 months. The time to complete the study however will depend on the effect size of both arms of the intervention: the written care plan and the PHR. If we we look at the research that has been done with care plans and preliminary research with PHR's, we anticipate that we should have sufficient power to complete the study in a 2 to 2 1/2 year period.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

As noted above, this study will target a vulnerable population of Spanish speaking Latino families and English speaking families with minimal health and computer literacy. We know that a significant contributor to health disparities is the relative access to effective health technologies. If we can demonstrate that we can provide access to the PHR and that it is an effective technology, we feel we can address a potential inequality to access to effective carer for a vulnerable population.

Nominator Information

Other Information About You: (optional)

Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

The development of a free standing personal health record in our institution is a pilot project. In order to justify the continued support of this program in both time and resources we need to document a positive impact on the value of care we provide to our patients. This will include both the impact on clinical outcomes and the cost of care. This project will also help us answer the question of whether or not it is possible to create work flows with PHR's that will allow us to reach vulnerable families with health and computer literacy concerns. It is our hope that the results of this study will be generalizable to other pediatric settngs and organizations.

Are you making a suggestion as an individual or on behalf of an organization?

Individual

Please tell us how you heard about the Effective Health Care Program