Over four years, I worked with pediatric and reproductive mental health programs to envision and launch a new way for patients and families to share relevant information with providers for their assessment and care. Working under heavy technical, legal, and organizational constraints, I drove research, design, and implementation of the new platform in outpatient and inpatient clinics. Using existing infrastructure, we accomplished three objectives: to provide clinicians with standardized information that can be used to evaluate clinical outcomes, allow patients and families a better way to voice their needs and treatment goals, and establish a data registry that could be used to improve services and clinical research.
I took on many different roles in the end-to-end design process and continued through implementation and evaluation:
Before coming in for their assessment, patients and families completed paper packages of intake forms that were mailed to them, returning them by fax, email, or in-person on the day of their appointment. The forms that were sent out differed across different clinics and existed in multiple formats (e.g. paper copies, electronic files). The hospital’s electronic medical record (EMR) system does not currently allow families to directly share information and store the data in its records. This led to missed opportunities in several areas:
The lack of standardized information made it difficult to compare and monitor how a patient was doing throughout their journey to different clinics. Families were providing information that could not always be used efficiently for their care.
There was heavy burden on patients and families and clerical staff to keep track of and return paper forms. Paper copies of validated measures needed to be replaced regularly, placed in packages, and mailed. Fax was often still used as a method to return forms.
Since the information that families were reporting was not standardized or collected in a single format, it could not be used for program evaluation, quality improvement and clinical research without extensive efforts to consent and coordinate the data.
We wanted to enhance patient care, advance research, and drive system and service design by changing the way that data is collected and used. The goals for the primary groups affected by the project were to:
Provide patients and families with a better way to provide information for their care and share their story before they come in for assessment.
Give clinicians routine, standardized data to better understand their patients, do their assessment, and make treatment recommendations.
Create the necessary data infrastructure and access to support quality improvement projects and integrated research.
We replaced the existing paper packages with electronic forms that enable patients and families to directly enter their information online into a secure data registry that can be used for clinical, quality improvement, and research purposes.
Here is how it works:
When a referred patient is accepted, clerical staff call the parent/ guardian with the appointment date, and ask for their consent to email them the forms and their email address.
The patient is entered as a new record in the Registry, which triggers an email with a customized link to the secure online forms to the parent/ guardian (or youth if old enough).
Families complete their forms on their own time before their appointment date. The platform allows them to save their progress as needed.
Youths who are able to self-report (based on age and clinic) are asked to share their needs and experiences separately. They complete separate forms that are inaccessible from their guardians in order to maintain privacy.
When preparing for upcoming appointments, clerks pull a summary report of the information reported by patients and families from REDCap and include it in the patient chart.
The report includes automated scoring of patient-family responses on validated clinical measures and recommendations based on the scores.
Before seeing the patient and family, clinicians use the report to review what their story is, medical history, and what they are looking to get out of their assessment and treatment.
During the assessment, clinicians use the report to guide their conversation with the family, build the patient-provider relationship, and improve patient engagement by encouraging them to be involved in their care.
I was brought on in the early discovery phases of the project to engage with stakeholders at all levels and envision what the registry could look like within each program and clinic. In addition to developing an overall sense of how to design the registry, I also needed to understand the landscape we were working in; the project would entail a major change in practice and protocols for staff at all levels, and we needed to understand attitudes towards this change and the needs and priorities of everyone involved before we could proceed with design.
My research and engagement spanned the following:
What do clinicians find useful for assessment of the patient? What information do patients and families find meaningful to share with their care team?
What are the existing patient journeys and processes in the clinics? How can we design the registry and user flows to integrate seamlessly into existing staff workflows?
What are the policies and guidelines governing electronic transmission and storage of patient data? Are we allowed to communicate with families electronically?
"I should only have to fill out what is relevant to my care, absolutely necessary, and addresses my priorities. Forms should be easy to navigate."
"Information should be readily available, timely, fulsome, accurate, and supports my assessment. Forms should minimize burden on the families."
"The interface needs to be user-friendly and efficient. I need to understand how to help patients and families navigate their forms effectively."
"I want to easily access patient data that was not available before. We want more resources available for clinics to do research, especially if they don't have other funding."
"Standardized data collected from all our patients can help us achieve our goals and inform service planning. The data system should minimize costs and mitigate system impacts."
"Patient data needs to be safely and securely stored and access limited to a needs-only basis. The technology used should be the best solution available and meet organizational requirements."
Considering the insights, our work was guided by a few critical principles:
Minimize the information that families would have already provided elsewhere, or that clerks have already entered into different systems.
Wherever possible, only ask the family to complete what helps them share their story and their goals. Make sure that information is clinically relevant.
Insure that the system is designed in a way that protects sensitive patient information as expected by law and for families to feel comfortable.
Working in the public healthcare sector, I had to navigate technological, organizational, and legal constraints. As we did not have the resources to design a platform from scratch, we leveraged an existing research data collection platform called REDCap as the primary data infrastructure to build the online forms. REDCap was already in use at the hospital and there was an existing support and training team to manage it. Although the patient-facing forms was only customizable to a degree, the platform allows ample flexibility in structure/ workflow and a plethora of tools to manage large datasets. It was also already in the process of being cleared to host patient data - a huge barrier broken as there were restrictions on what we could use due to privacy laws and organizational policies.
A large piece of my work was about content development - identifying the forms and validated measures that families would be asked to complete. We needed to balance the need of clinicians, researchers, and administrators to collect the data for secondary purposes (i.e. quality improvement, evaluation, research) with the critical need to minimize burden on families completing them. The list of forms informed the overall structure and information architecture of the Registry and how it could be built using the REDCap platform. It would also ultimately determine how data exports would be structured, an important consideration for those using the information to support quality improvement and research.
As families going to different clinics (e.g. ADHD, OCD, Infant, etc.) were very different and clinicians needed very different information to do their assessment, it became obvious very quickly that the forms needed to be flexible and dynamic to suit the needs of each clinic and each family. I mapped out the information architecture in collaboration with the clinics and had it reviewed by patient and family volunteers. Some forms are completed by all patients and families, while others are clinic-specific and/ or patient-specific. This ensures a minimum standardized data set across all clinics, flexibility for each clinic to get domain-specific information they need for care, and that patients and families were being asked questions relevant to their top concerns.
As the Implementation lead for the project, I worked with the Program Manager to strategize and plan a phased product roadmap and approach to launching the pilot in outpatient clinics. The pilot began with a soft roll-out plan customized for each clinic. I met with each clinic clerk to set targets for numbers of patients to offer online forms to per week. This soft rollout enabled clerical staff and clinicians to adjust to new workflows, and allowed me to adequately support and troubleshoot emergent issues. By using this strategy, I was able to adapt to our limited resources and adequately support everyone on the front-lines that needed it. I used continued engagement with impacted stakeholders through the pilot and beyond, attending team meetings, huddles, focus groups, and connecting with parents and youth to collect ongoing feedback for regular improvement cycles and active change management.
Our initial pilot in Outpatient clinics ran for six months from April 17, 2019 to October 9, 2019. I advised and contributed to a comprehensive evaluation report and iterative improvement cycles until August 2020.
When I left the project, we were just about to scale the Registry to Inpatient programs in the hospital, as well as begin to send follow-up forms/ measures to families at regular intervals after they had been seen. This longitudinal information would provide clinicians with the ability to see how patients and families are doing across time, and allow clinical programs to evaluate their services and outcomes.
Early on, we realized that successful implementation would require both organizational and cultural change. Many people were skeptical that the project would add value to their work and were wary of changing the way they do things on a daily basis. It was a long process to build the necessary relationships and trust before we could perform the work, and it was critical to put in time to truly understand their concerns and actively address them. We found that most teams had leaders (formal or informal) who were highly respected by others and could reassure and support others throughout the design and implementation phase. Our success could not have happened without identifying and collaborating with these "champions of change".
It was a challenge for people to conceptualize the new system before seeing a prototype - this prolonged the process of engagement and creating buy-in for the project. Even when clinics were on board with the overall vision, many had trouble imagining how it would fit in with their daily workflows. In the future, I would prototype and test much earlier and walk stakeholders through role play or an experience prototype to have them better understand what we were trying to accomplish. People were always much better at providing feedback when they had something concrete to review or interact with. It enriched our conversations and created the trust that this could create a better experience for both patients and families and staff.