166 13 A Comprehensive Behavioral Health System for Identifying and Treating…
prevent complications, and help keep the family tied in to the system. Thus, ap- propriate supports at this level would be targeted interventions focused on the specific area of risk identified (e.g., child behavior problem), help obtaining re- sources (e.g., from a social worker), and/or support for navigating the healthcare system (via a patient navigator or Care Ambassador (see below), depending on specific needs.
• Low risk patients have adequate coping and supports. The indicated intervention at this level would be universal educational materials, and access to illness man- agement tools that could make living with and managing their disease easier.
Yearly Psychosocial Reassessment For many patients, problems with adherence do not emerge until they have lived with the illness for a while. Some children and youth may experience management burnout (Polonsky 1996). Others may pass through the developmental transition into adolescence, a time during which illness management and control is known to be especially challenging, or may encounter other stressors that complicate management. As a result, continued monitoring of patients’ adherence and psychosocial functioning is critical.
A Web-Based System for Evidence-Based Intervention at
mHealth interventions also have the potential to be more acceptable to patients who would be reluctant to go see a psychologist or psychiatrist, thereby increasing the reach of effective services to patients who might otherwise “fall through the cracks.”
In the next section we describe how a web-based hub could be used to link and integrate the different components of a multi-level, multimodal system for promot- ing adherence. We sketch out a system with two access points: a public portal, freely open and available to the public; and a patient portal, accessible only to patients being treated at a specific institution (Fig. 13.2).
Universal Preventive Services
The Public Portal
Universal educational resources and tools could be provided for patients and the public at large as a primary prevention strategy to help promote treatment adherence.
To be most effective, materials should be developed specifically for different age groups (children, teens, and parents), and in some cases also for specific-diseases.
Important educational resources to consider for inclusion in the public portal include:
Fig. 13.2 A web-based hub linking patients to services at different levels
168 13 A Comprehensive Behavioral Health System for Identifying and Treating…
• Basic information on medical treatments for specific (targeted) medical popula- tions, including best practice treatment guidelines abstracted from the current literature and written in a patient-friendly format
• Disease-specific information on high risk behaviors—e.g., insulin omission in diabetes
• Adherence “tips” and informational pages on topics such as problem-solving, stress management, and managing family conflict
• Patient essays and videos presenting personal stories about challenges and suc- cesses in managing different chronic illnesses
• Links to local, regional, and national resources
Important web-based tools to help with illness management include:
• Customizable medication reminders linked to the patient’s phone
• Customizable appointment reminders
• An interactive problem-solver program to help patients develop possible solu- tions to common adherence problems and barriers
• A nonadherence risk assessment tool (e.g., the RI-PGC; Schwartz et al. 2014, in which the user answers a few questions and receives a computer-generated risk estimate for possible nonadherence with linked suggestions for seeking further care.
The website could also be used to house professionally monitored discussion forum(s), to provide access to a patient community. It would be important for these forums to have lower age limits (e.g., 12 and older), to be disease-specific, and to be carefully monitored for potentially harmful information (e.g., diabetic teens sharing the information that omitting insulin can be an effective way to control weight).
The Patient Portal
In addition to the universal materials and tools suggested above, patients in partici- pating clinics could also be given access to tools and supports linked to their medi- cal chart and to the hospital/clinic where they receive their treatment. Of course, security concerns in designing this system would be paramount, to ensure that only the patient (and his/her legal guardians) would have access to the information. The following elements would be important to include:
1. Patient-specific health information
• A link to the patient’s medical chart
• A downloadable summary of the patient’s current treatment regimen (pre- pared by his/her healthcare provider), formatted to be maximally useful and easy to read
2. Tools linking the patient to different parts of the healthcare system
• An automatic appointment reminder tool linked to the hospital/clinic system
• Assistance with medication refills, linked to the patient’s pharmacy
3. Adherence-related supportsThese could be provided by an “expert” in adher- ence. The expert could be a psychologist, a supervised predoctoral resident or postdoctoral fellow in psychology, or a licensed Masters-level counselor with training in behavioral health. Important services include:
• A monitored email address for adherence-related questions
• Ask the Expert—online help for adherence-related difficulties, provided through an instant messaging format at pre-specified times during the week
• Ability to request an appointment with an adherence specialist 4. Access to a psychosocial screening tool for yearly reassessment
Yearly face-to-face follow-up screening would probably not be feasible for large clinics and hospitals, if done on a universal scale (although it would work just fine in a small clinic setting). To accomplish follow-up screenings, a computer- ized screening tool could be built into the integrated system and access over the hub. Patients could receive yearly reminders to log in and complete the screen; in addition, they could access the tool any time they want to complete a self-assess- ment. The tool could operate as a nomogram, using pre-programmed algorithms to calculate risk and provide immediate feedback to the user in a patient-friendly format, with a recommendation for follow-up care as indicated based on level and type of risk.
Specific risk factors could also be linked to appropriate materials and tools also located on the hub. For example:
• A parent reporting moderate conflict over illness management could be directed to educational materials on reducing/managing conflict
• A parent indicating socioeconomic risk and lack of insurance could be linked directly to social work support
• A parent reporting multiple risk factors could be given a recommendation for psychology follow-up, including a link to request a follow-up appointment To make the system truly integrated into clinical practice, screening results could also be emailed to the treating provider (and/or to the adherence expert if one is on staff), who could review the information, place it in the patients electronic medical record, and contact the patient (if an adult) or the parent via email if any problems are indicated.
Mobile App
Creation of a mobile phone app linked directly into the website would greatly in- crease the system’s reach.