Improving Sickle Cell Care for Adolescents and Adults in Chicago

ISAAC

Improving Sickle Cell Care for Adolescents and Adults in Chicago (ISAAC)

PROJECT BRIEF: ISAAC is a 6-year NIH/NHLBI-funded study intended to improve clinical care and patient outcomes of people with sickle cell disease by designing, testing, and implementing an integrated model of longitudinal and emergency care. ISAAC takes a multidisciplinary approach by incorporating design as a partner in a traditionally clinical space. The design research team’s role on the project is to integrate the real-world experiences of ED providers, clinic-based providers, and primary care doctors who care for people with Sickle Cell into a systematic understanding of key stakeholders and to drive toward better interventions.

TEAM: I worked on ISAAC across two phases of the project (Spring 2017 and Summer 2017), each phase comprised of 4-person teams. I acted as the project lead over the summer phase.

WHAT WE DID: Primary and Secondary Research, Coding and Analysis, Service Blueprinting, Opportunity Discovery, Prototyping.

PLAN

stakeholder mapfield kit development

BUILD CONTEXT

literature reviewtools analysis

DISCOVER

stakeholder interviewsdirect observationcoding & analysis

SYNTHESIZE

insight & opportunity identificationdesign principlesmodel developmentsystem mappingservice blueprintingspace build-out

DELIVER

stakeholder presentations (x3)poster presentation at SCDAA annual conference

PROCESS (kind of)

A design-led analysis of educational tools for sickle cell patientsBraunstein, Sarah; Erwin, Kim, MDes; Norell, Sarah, MFA, MDes; Li, Shangyanyan; Radecki, Lisa, MDes; Cook, Aaron, MDes; Hsu, Lewis, MD, PhD University of Illinois at Chicago (UIC) and Illinois Institute of Technology (IIT)

Improving Sickle cell care for Adults and Adolescents in Chicago (ISAAC) Population Health SciencesUniversity of Illinois at Chicago1220 S Wood Fl 3Chicago, IL 60608kerwin4@uic.edu

ISAAC (Improving Sickle cell care for Adults and Adolescents in Chicago) is an NHLBI-funded project (contract # U01HL134042) and one of the first applications of design principles to the realm of sickle cell disease.

Educational tools play an important role in care delivery by supporting self-management and facilitating communication between patients or caregivers and medical providers.

Studies have been conducted to survey the body of tools available for other chronic conditions such as asthma, but this analysis is absent for sickle cell disease.

The purpose of this project was to assess educational tools available to sickle cell disease patients and caregivers using a human-centered design lens in preparation for a the ISAAC grant, a randomized clinical trial testing interventions including tools for patients.

The team gathered 95 sickle cell education and support tools gathered from a spectrum of publicly-available sources. Of the 95 tools collected, 42 were focused on acute pain and pain crises.

Of the 42 tools, the team focused on 26 patient and caregiver facing

tools, eliminating tools intended for medical professionals from the main analysis. Tools were assessed for their usability, accessibility, and actionability.

Based on our findings, the team developed a model for understanding how patient tools support decision making. This model can be used to guide future tool development.

Introduction

• Assess the tools available to sickle cell disease patients and caregivers focused on acute pain and pain crisis through a human-centered design lens.

• Generate guidelines for design and evaluation of sickle cell educational tools.

• Develop a model for understanding the relationship between patients and information tools

Objectives

Tool Collection

Tool Analysis

Model Development

Only free materials from academic, government, and other reputable health sources which were available through the internet were considered.

26 tools focused on acute pain and pain crisis intended for patients and caregivers were evaluated for usability, accessibility, and actionability. Analysis criteria developed based on readability and usability studies.1-3

A model was created to reveal how patients engage with tools and the information they look for in a crisis.

Methods

Results

References1. Gupta S, Wan FT, Ducharme FM, et al. Asthma action plans are highly variable and do not

conform to best visual design practices. Ann Allergy Asthma Immunol 2012; 108: 260–265.

2. McClure, Elizabeth et al. “A Mismatch Between Patient Education Materials About Sickle Cell Disease and the Literacy Level of Their Intended Audience.” Preventing Chronic Disease 13 (2016): E64. PMC.

3. Wallace, Lorraine S., et al. “Readability Characteristics of Consumer Medication Information for Asthma Inhalation Devices.” Journal of Asthma, vol. 43, no. 5, Jan. 2006, pp. 375–78.

4. Earles, Ann, et al. A Parents’ Handbook for Sickle Cell Disease (Part II). California Department of Health Services, 1993.

5. Educator’s Guide to Sickle Cell and School. Children’s Mercy Kansas City, 2015.

6. My Pain Plan. Children’s Hospital and Research Center - Oakland.

7. Day, Sara, RN, MSN. Your Child and Sickle Cell Disease. St. Jude Children’s Research Hospital, 1990.

8. Living Well With Sickle Cell Disease Self-Care Toolkit. Center for Disease Control: National Center on Birth Defects and Developmental Disabilities — Division of Blood Disorders.

9. A parent’s guide to managing sickle cell disease. Brent Sickle Cell & Thalassaemia Centre, 2012.

Do I have the right tool?

Can I find my symptoms?

What should I do next?

Organize content for easy navigation.

Group related pieces of information to lessen the cognitive load on individuals, who may be under stress while accessing tool.

Use a consistent structure throughout tool to organize content.

Provide consistent and explicit messaging.

Eliminate ambiguity for users who may be comparing their experience to the written content.

Provide clarity and detail without overwhelming people with information.

Use plain language whenever possible. Include definitions and illustrations to explain medical terminology.

Provide actionable guidelines.

Include descriptive and specific actions that help people know exactly what to do. General recommendations (e.g. reduce unnecessary stress) are not actionable.

Distinguish recommended actions from other types of information so they can be easily located.

Include clear sequence with recommended steps.

Order actions to help people act on them.

Facilitate customization of the tool.

Provide opportunities for interaction and personalization to enable deeper engagement.

Help users take action with confidence.

Minimize use of vague and ambiguous wording (e.g. “may need attention by a doctor”).

Clearly state the objective of the tool.

State the tool’s intended audience.

Specify subject matter and relevant patient type.

Help individuals quickly determine if a tool is relevant to them.

Facilitate the dissemination of relevant information between parties.

Provide easy criteria for patients to select tools (age, sickle cell type, sex).

Support application of care information to appropriate audiences.

Help people determine the context in which a tool is relevant.

Support comparison across tools to choose the most appropriate one.

Created by merijnfrom the Noun Project

How can I find useful information when I have a pain crisis?

Tool describes the type of patient that the content applies to.

from A Parents’ Handbook for Sickle Cell Disease4

Tool distinguishes content by intended audience.

from Educator’s Guide to Sickle Cell and School 5

Tool states intended use.

from My Pain Plan6

Tool supports medical terminology with illustration.

from A Parents’ Handbook for Sickle Cell Disease4

Tool explains medical terminology with definitions

from Your Child and Sickle Cell Disease7

Tool defines a structure for organizing content, e.g. highlighting action items.

from Your Child and Sickle Cell Disease7

Tool separates action item (highlighted in red) from other informational content (highlighted in blue).

from Living well with Sickle Cell Disease, Self-Care Toolkit8

Tool gives patient ownership and facilitates the creation of a plan by providing defined space to write individualized action items

from My Pain Plan6

Tool provides caregivers with what to expect and things they can say to their child.

from A parent’s guide to managing sickle cell disease9

Users needs 3 kinds of information for decision support during a pain crisis

11

2 3

Most tools used a format that does not conform to information design principles, resulting in content that is hard to find and use.

Out of 26 patient and non-medical facing tools:

• 46% had a longer average line length than what is recommended for optimal readability (< 70 characters per line).1

• The tools each had an average of 15.5 pages. Approximately 20% of the content in each tool focused on acute pain crises. Typically, this content was dispersed throughout the documents rather than “chunked” together in single location.

There is an opportunity for the deliberate application of information design principles to bring clarity and prioritization to the content of a tool.

USABILITY

Usability refers to a tool’s “human factors” elements, examining how well the structure of the tool supports the tool’s function. This includes:

• Visual hierarchy• Typography• Use of color to differentiate content• Organization of content

Most patient tools offer content written significantly above the optimal reading grade level.

Important information may be skipped or misunderstood due to the complexity of the content. In the context of an acute pain crisis, this can be annoying at best, dangerous at worst.

There is an opportunity to create tools with content at appropriate reading grade levels that can better support user comprehension.

ACCESSIBILITY

Grade Level

# o

f To

ols

1 2 3 4 5 6 7 8 9 10 11 12

Target reading grade level for patients + caregivers

69% were not written at the target reading grade level (grade 5-6).3 The median reading grade level for all tools was 8.5.

Accessibility refers to how well a tool’s content can be understood by the intended audience. This includes:

• Reading grade level (Flesch-Kincaid)• Presence of defined medical terms

Most tools scored low on actionability, functioning better as reference guides than how-to guides.

Support and education opportunities are missed because tools do not provide a reason to engage regularly.

Out of 26 patient and non-medical facing tools:

• 42% support interactivity, meaning users are prompted to write in or otherwise engage (e.g. digitally) with the tool.

• 23% have recommended actions ordered in a sequence

• There is a total of 396 action items more than half (52%) of recommended actions are to seek urgent medical help.

There is an opportunity to develop more interactive tools in order to support patients behavior not just patient education.

Seek medical help 206 actions

Communication 54 actions

Condition management 136 actions

52%

14%

34%

ACTIONABILITY

Refers to how clearly a tool provides instructions for next steps or engages with a user. This includes:

• Interactivity• Allowing for customization• Number & type of action items• Specificity of action items

2

ISAAC // Field notes Clinic and ED Observations

Observation #

ISAAC // Field notes // Clinic + ED observation 1

Targets for direct observation and documentation Behavioral mapping, documentation of patient/staff experiences, processes + interactions, staff roles, site-level messages + cuesISAAC // Field notes

Nurse in-situ interview

Interview #

ISAAC // Field notes // Nurse in-situ interview 1

Two phases of interviews & observations

PHASE ONECommunity health workersSocial workersSickle cell doctors & nursesPatient support group

PHASE TWOED doctors ED charge nurse

3

Capturing the emotional experience of caring for patients with sickle cell disease

Picture pulls helped facilitate conversations about what it feels like to care for patients with sickle cell disease, giving participants a way to anchor emotions and open up to sharing stories.

“A lot of patients and family members feel a big burden, a big weight on them. Many of them don’t like to admit that when the patient comes to their demise, it’s a relief.” —social worker

“This one is because I do get a broken heart because I have seen so many of them die, and it’s just so painful when it happens...I see so much pain and death it hurts.” —social worker

4

Drawing out tacit knowledge through activities and prototypes

Interview participants tested and gave feedback on a pre-existing digital tool that a UI sickle cell provider had co-developed. Interviewees helped us understand how a tool such as this one may or may not fit into their workflow, how well they’d trust a similar tool, and the pieces of information they’d find useful.

The “care circle” activity, completed by sickle cell nurses and physicians, helped our team map secondary and tertiary stakeholders in the sickle cell care ecosystem, as well as communication gaps and opportunities.

5

Organizing the data through rigorous grounded theory coding

Our team of four undertook grounded theory coding of over 20 stakeholder interviews. We worked through our inter-coder reliability checks with hundreds of post-it notes and hours of discussion. These sessions were arduous but critical for developing a shared mental model of our data set.

We collaboratively built a list of over 300 codes encompassing everything from patient experience to providing care in the ED. This code list was adopted by the national ISAAC team for ongoing use over the course of the project.

6

Developing a new understanding barriers & facilitators analysis, design requirements

ContentRequirements

UserRequirements

Contextual Requirements

MD

Display information effectively: cluster information pertaining to the same topic together; apply effective visual hierarchy to enable the identification of priority information quickly; use visual support elements when possible to facilitate communication with patients.

Support communication about condition: help patients communicate their healthcare needs and convey concerns related to their disease to their providers.

Support understanding and navigation of insurance and benefits: help patients to learn about insurance options and limitations, cost of care, and where their insurance is accepted.

Remind patients to apply for disability (if relevant) or renew insurance to ensure continuity of coverage.Convey a positive tone: tool should

have a warm tone that implies a positive influence on their life.

Focus on lifestyle: educate users on the importance of a healthy lifestyle and assist them in following good practices.

Facilitate planning through self reflection.

Help users identify and avoid pain triggers.

Help users decide when to seek medical help.

Build community: provide channels for users to connect with other sickle cell patients who have successful experiences managing the disease to learn from each others and discuss their life.

Clarify actions: support patient compliance by breaking down actions into individual steps with clear sequence.

Transparent communication and collaboration in care: keep patients informed about their treatment plan and the treatment schedule that the medical staff will follow.

Indicate the context about why some kinds of treatment will be performed.

Provide social support: connect patients with support services like social workers who can provide guidance for different life stages.

Help patients learn about available care resources.

Assistance connecting to support services to plan for school and employment.

Support for securing accommodations at school or workplace.

Reduce complexity: provide definitions for medical terms and keep reading grade level between 5-6.

Secure information: private patient information should be securely stored and sharing is controlled by the user.

Promote supplemental treatment: empower patients to work toward pain prevention (rather than constantly seeking pain relief).

Learn and adopt alternative treatment options (e.g. mindfulness, various therapies) to potentially reduce need for opioids.

Engage the user: empower patients with ability to set goals and take notes.

Know how to connect: be able to connect and consult with sickle cell team before going to ED to learn the right pathway and also potentially prevent ED visit.

Remind the patient: provide patients with option to set reminders to facilitate care.

Structure education: provide information and education for care when it is relevant to the patients needs.

Allow customization (patient able to customize limited portion of tool): support patient ownership of tool with customizable features.

Receive non-medical treatment: get non-medical treatment (e.g. comfort measures like blankets, warm packs, etc.) when SC patient is in ED.

Content always up to date: create mechanisms for ensuring that the patient-facing tool contains the most up to date medical records, care plans, and pertinent care information and best practices.

Know when and where to get best care: educate and inform patients on where and when they will be able to receive the best and fastest care for a pain crisis (e.g. the acute care center).

Catalogue pain history: tool allows users to track and monitor their sickle cell symptoms, pain crises, and other health matters, which can be used to start dialog with physicians and community support.

Describe pain: provide patient with way to easily communicate their pain level, location, and type.

Support care compliance: help patients understand how to take their prescriptions, maintain appointments and follow-up visits, and other behaviors required for compliance.

Align content to user context: reveal content that is relevant to patient.

Provide contextually relevant information and how these factors may effect someone with SCD.

Use common language to describe symptoms, and pair symptoms with recommended actions. Support education and compliance

with Hydroxyurea: help patients understand what treatment with HU looks like, including the benefits, risks, and management requirements of using HU to support informed decision making.

Support HU-related responsibilities, including medication adherence, managing lab-related appointments, and pharmacy navigation. Reduce steps to care: reduce the patient

burden to getting care (e.g. getting labs and tests closer to home, easier access to medication). Providing necessary information and use digital methods to eliminate unnecessary activities and travels.

Adapt to varying levels of resources: consider that some users may not have access to a smart phone or large amounts of data.

Create solutions that can accommodate a range patient situations.

Facilitate flow of information/create common language: tool facilitates communication and interaction between patient and other individuals in care and support network, including medical staff, family, employers, friends, etc.

Team based approach: a team-based approach to care to prevent opioid dependency and addiction as a result of pain treatment.

Patients

During coding and analysis, we began collecting barriers and facilitators, as well as noting behaviors and perceptions, across the ecosystem of care. Mapping the relationships between these entities began to showcase the complexity and interdependencies within this system and identify particularly fraught junctures.

During synthesis, our team transformed insights into an in-depth set of design requirements for use by the national team and future ISAAC designers. We used the Multi-level Requirements Framework in order to generate principles for how a solution needs to function across different contexts.

Multi-level requirements framework

Contextual levelSupports key interactionsFits workflowsPrompts key conversation + reduces practice variation

User needs levelRole + responsibilitiesKnowledge needsRelevance + value

Content levelBest-practice guidelinesClear messaging + actionsReading level + language fitVisual hierarchy + structure

MD

7

Care delivery experience in the ED service blueprint organizes critical activities & interactions

We shared this service blueprint with sickle cell physicians and ED doctors during a final share-out. It served as a neutral centerpiece on which we could hang more sensitive conversations.

For example, in our interviews we learned that sickle cell patients are categorized as a low priority in the ED and this is a point of contention. We were able to surface this conversation by diving into the Triage portion of the blueprint and facilitating discussion.

We compared what the treatment process looks like “on paper” to real life discussing factors like: institutional approach to care; ED providers’ attitudes toward and comfort with administering opioids; prior experiences with SCD patients; and job satisfaction.

8

Using space to organize & communicate findings

Our team created a space where our research could “live,” visible to anyone who wanted to walk through and useful for our team as we collected and processed research. The project bay became a critical space for stakeholder engagement, connecting them back to the stories we were hearing, as well as getting quick feedback on new ideas (like sketched prototypes).

paper prototypes

key learnings from literature review

primary research

9