ISAAC. Improving Sickle Cell Care for Adolescents and Adults in Chicago

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Cecily Reeves
5 years ago
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1 ISAAC Improving Sickle Cell Care for Adolescents and Adults in Chicago

Improving Sickle Cell Care for Adolescents and Adults in Chicago (ISAAC) nal tools for sickle PROJECT BRIEF: ISAAC is a 6-year NIH/NHLBI-funded study intended to improve clinical care and patient

2 Improving Sickle Cell Care for Adolescents and Adults in Chicago (ISAAC) nal tools for sickle 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. PROCESS (kind of) PLAN BUILD CONTEXT DISCOVER SYNTHESIZE DELIVER stakeholder map field kit development literature review tools analysis stakeholder interviews direct observation coding & analysis insight & opportunity identification design principles model development system mapping service blueprinting space build-out stakeholder presentations (x3) poster presentation at SCDAA annual conference 2

Two phases of interviews & observations PHASE ONE Community health workers Social workers Sickle cell doctors & nurses Patient support group PHASE TWO ED doctors ED charge nurse ISAAC // Field notes

3 Two phases of interviews & observations PHASE ONE Community health workers Social workers Sickle cell doctors & nurses Patient support group PHASE TWO ED doctors ED charge nurse ISAAC // Field notes Clinic and ED Observations Targets for direct observation and documentation ISAAC // Field notes Nurse in-situ interview Behavioral mapping, documentation of patient/staff experiences, processes + interactions, staff roles, site-level messages + cues Observation # ISAAC // Field notes // Clinic + ED observation 1 Interview # ISAAC // Field notes // Nurse in-situ interview 1 3

Capturing the emotional experience of caring for patients with sickle cell

to care for patients with sickle cell disease, giving participants a way to

This one is because I do get a broken heart because I have seen so many of them

..i see so much pain and death it hurts.

4 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. 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 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 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.

5 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

We worked through our inter-coder reliability checks with hundreds of

These sessions were arduous but critical for developing a shared mental

We collaboratively built a list of over 300 codes encompassing

6 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

MD Developing a new understanding barriers & facilitators analysis, design requirements Content Requirements User Requirements Contextual Requirements Patients Display information effectively:

facilitate communication with patients. Convey a positive tone: tool should have a warm tone that implies a positive influence on their life.

Reduce complexity: provide definitions for medical terms and keep reading grade level between 5-6. Align content to user context: reveal content that is relevant to patient.

7 MD Developing a new understanding barriers & facilitators analysis, design requirements Content Requirements User Requirements Contextual Requirements Patients 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. Convey a positive tone: tool should have a warm tone that implies a positive influence on their life. Clarify actions: support patient compliance by breaking down actions into individual steps with clear sequence. Reduce complexity: provide definitions for medical terms and keep reading grade level between 5-6. 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. Engage the user: empower patients with ability to set goals and take notes. Remind the patient: provide patients with option to set reminders to facilitate care. Allow customization (patient able to customize limited portion of tool): support patient ownership of tool with customizable features. Content always up to date: create mechanisms for ensuring that the patientfacing tool contains the most up to date medical records, care plans, and pertinent care information and best practices. Multi-level requirements framework Support communication about condition: help patients communicate their healthcare needs and convey concerns related to their disease to their providers. 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. 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. Secure information: private patient information should be securely stored and sharing is controlled by the user. 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. 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. Structure education: provide information and education for care when it is relevant to the patients needs. Receive non-medical treatment: get non-medical treatment (e.g. comfort measures like blankets, warm packs, etc.) when SC patient is in ED. 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. 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. 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. 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. 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. 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. Content level Best-practice guidelines Clear messaging + actions Reading level + language fit Visual hierarchy + structure User needs level Role + responsibilities Knowledge needs Relevance + value Contextual level Supports key interactions Fits workflows Prompts key conversation + reduces practice variation MD 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. 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.

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.

8 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 key learnings from literature review paper prototypes Our team created a space where our research could live, visible to anyone who wanted to walk

9 Using space to organize & communicate findings key learnings from literature review paper prototypes 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). primary research 9

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