Improving Patient-Centered Care with Decision Tools that Build Trust

This blog post is authored by a group of patient advocates who collaborated on a project called the Clinical Decision Support Innovation Collaborative. It is funded by the Agency for Healthcare Research and Quality.

Have you ever received guidance from a doctor that was confusing or didn’t seem realistic to apply to your life? Many people have. When faced with questions about what kind of treatment to pursue, clinicians use decision support tools that provide them with the latest research results and proven results. The extent to which these tools consider things like a patient’s unique life circumstances can have a major impact on how each person experiences their care.

Consider that, according to the CDC, 20 to 30% of prescriptions for people living with chronic health conditions are never filled and about half are not taken as prescribed. Why do you suppose that is?

Clinical care and daily life are deeply intertwined. Healthcare choices can’t be separated from who we are as people because our experiences, beliefs, and daily lives all play a crucial role in how we make decisions about our health and treatment.

For example, let’s say a patient is newly diagnosed with insulin dependent diabetes and is prescribed insulin, which typically requires refrigeration. However, someone may be in a difficult housing situation without reliable access to a refrigerator. If this patient’s doctor had a tool that alerted them to the patient’s housing situation and provided alternative medication options, the doctor could prescribe a particular type of insulin that can be stored at room temperature.

Our project is funded by the Agency for Healthcare Research and Quality (AHRQ) and called the Clinical Decision Support Innovation Collaborative (CDSiC). We envision a healthcare system where tools are widely available to address real-life scenarios like the one described above. We are creating resources to help patients, caregivers, and care teams have the right information at the right time to make knowledgeable decisions that can improve health and well-being for all people.

Patient-centered clinical decision support is a specific kind of clinical decision support that considers a patient’s needs, values, and preferences. This is the focus of the CDSiC. This blog post explains the concept of patient-centered clinical decision support and how it relates to patients. We also highlight three key areas to advancing this: trust, co-design, and making sure tools fit into patients’ lives to offer more value.

Patient-Centered Clinical Decision Support (PC CDS) Explained

Clinical decision support tools are digital tools that help inform patient care. When faced with questions about what kind of treatment to suggest to a patient, healthcare providers often consider recommendations that are made by these digital tools based on the situation. These tools provide them with the latest proven approaches and best practices.

PC CDS is different because these tools draw from research that studies questions about health care that are meaningful to patients and includes patient perspectives. PC CDS also helps ensure a specific patient’s needs, preferences, and values are incorporated into care decisions. PC CDS can also aid in discussions and decisions between patients and their health care team. This is called “shared decision-making” which supports and helps engage each patient, their caregivers, and care teams to make healthcare decisions that align with patient’s needs, preferences, and values.

Patient-centered clinical decision support is the focus of the AHRQ CDSiC, a community of diverse stakeholders learning to use technology to better support care teams, patients, and caregivers. The CDSiC developed this picture to describe the four recommended patient-centered factors to include into patient-centered clinical decision support:

Knowledge – Include findings from research that studies questions that are meaningful to patients and includes patient representatives in the research teams.
Patient Data – Incorporate patient-specific data such as information about a patient’s access to healthy food or transportation options. This also includes the factors included in social determinants of health.
Delivery –Engage patients or caregivers through tools they can easily access such as apps and/or patient portals.
Use – Support shared decision-making by making discussions and information gathering easier between patients and their care team.

Three Important Areas to Advance Patient-Centered Clinical Decision Support

The following three key areas are crucial to the advancement of patient-centered clinical decision support: 1) trust, 2) co-design, and 3) alignment to patient lives.

Successful patient-centered clinical decision support requires boosting the level of trust between patients and healthcare providers as well trust in the recommendations themselves. Studies suggest there is a strong connection between levels of trust and showing where the information came from (this is also called “source credibility”). or the degree to which a message recipient perceives the message sender as relatable, appealing and credible. A CDSiC report identifies strategies for improving trust in sources such as adjusting messages to specific audiences and setting up ways to receive patient feedback.
Including patients who can help co-design tools is critical. Clinical decision support tool development has historically been led by health system leaders, electronic health record (EHR) developers, and health information technology experts. When developers don’t prioritize patient needs and preferences or invite patient input during design, the tools they design do not align with the lives of patients. A CDSiC report highlights how co-design can help by:
- Prioritizing empathy for patients and care givers’ expertise and life experience.
- Deepening developers’ understanding of the needs and challenges faced by health care providers, patients, caregivers, or other clinical decision-making partners.
- Inviting perspectives from other key stakeholders (e.g., health teams, vendor representatives) in the ecosystem, to build patient-centered clinical decision support that will be effective in the real world.
- Integrating different forms of knowledge and perspectives that each design partner can bring. While research expertise is certainly important, it must be paired with lived experience of patients and doctors alike for tools to be relevant and effective.
To build effective patient-facing decision support tools, we must consider and address patients’ medical data and preferences as well as real-world contexts so that guidance includes daily-living experiences in which they occur. It’s important to understand and incorporate patient preferences in shared decision-making. Another CDSiC report identifies and describes patient preferences related to PC CDS. This helps ensure that patient preferences are collected and used when making healthcare decisions. An additional CDSiC report provides a framework to help identify interactions between care teams and patients and caregivers where a PC CDS intervention could work within the clinical workflow and the patient life flow.

Conclusion

Technology is changing the way healthcare is received and delivered. Creating tools that give patients, caregivers, and care teams the right information at the right time to make evidence-informed decisions is critical to improving health and well-being. It’s important to involve patients to ensure that medical choices align with what matters most to the patient while still being grounded in clinical evidence. Patients want healthcare providers to view them holistically as individuals, rather than merely as a set of symptoms to treat.

Advancing PC CDS is central to achieving this vision. To be successful, we must address important areas such as trust, co-design, and the real-world contexts of patients’ lives. We’re working with the CDSiC to solidify these concepts and invite you to get involved, too!

As a part of your advocacy work on whole person-centered care, we encourage you to raise questions about the tools that are being used to support care decisions and ask providers to what extent those tools are patient-centered. Please visit our website to explore all the PC-CDSiC resources. You can also sign up for our mailing list to stay informed as we release additional resources.

Authors:

Lauren Adams is the senior director of marketing and communications at AcademyHealth, the leading professional association for health services and policy researchers, and leads dissemination and communication efforts for CDSiC.
Deb Collyar is a connector who founded Patient Advocates in Research (PAIR) “where research meets reality,” bringing ideas and people together for medical advances that offer real results for diverse patients and families.
Angela Dobes, Senior Vice President of IBD Plexus at the Crohn’s & Colitis Foundation, leads an innovative patient registry and biorepository aimed at advancing patient-centered precision medicine development and champions the inclusion of the patient voice in research and care.
As the founder of Patient Orator and author of Maternal Voices, Kistein Monkhouse, M.P.A., advocates for health equity by empowering patients to share their stories, fostering improved communication between patients and providers.
Tiffany Peterson is the Founder and CEO of LupusChat, a patient-driven online community organization whose mission is to improve the quality of life for those impacted by lupus through health literacy, support, and advocacy to create innovative initiatives utilizing technology and community outreach to educate, encourage, and empower patients, caregivers, and healthcare professionals worldwide.
Rina Dhopeshwarkar, Principal Research Scientist at NORC of the University of Chicago, is part of the CDSiC leadership team responsible for leading outreach activities for the project including with the patient advocacy community.