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AHIMA's Position

AHIMA supports the use of public policy to empower individuals to make better decisions about their own health using trusted data from traditional and emerging data sources. Health information professionals have the operational expertise to help inform public policy decisions that seek to empower individuals to make decisions about their health using trusted information. To empower individuals to become better informed and more involved in decisions that affect their health and healthcare, AHIMA believes that public policy must:

Guarantee an individual’s right to access their health information, regardless of where it is captured, stored, or exchanged. This includes having secure access to their health information in the form and format they choose.

Support the development of secure, consumer-centric digital tools to enable individuals to further engage with their health information. This includes the development and implementation of open application programming interfaces (APIs) and modern technical standards to support new applications, platforms, and services that allow individuals and/or their caregivers to participate in their care more easily. Improved usability of existing technology, including patient portals, mobile apps, and other digital tools is also necessary to further enhance consumer engagement.

Prioritize privacy and security. Engaging consumers requires attention to providing them with details regarding how their information will be used and how they may exercise their rights to maintain their privacy. Policy must also address patient identification to protect the confidentiality, privacy, and security of a consumer’s health information.

Promote positive patient-provider relationships to enhance trust and engagement. Policy must encourage providers to be transparent and communicate clearly with individuals and their caregivers to enable shared decision making and promote engagement in their health and healthcare. This includes fostering a collaborative care approach that is socially, ethnically, and culturally sensitive and designed with the input of the individual and/or their caregiver and the clinicians involved in their care.

Address limited health literacy. New approaches to enhancing consumer engagement must recognize the role of health literacy in improving consumers’ ability to engage in their health and healthcare. Improving health literacy requires health information to be accurate, accessible, in plain-language, and actionable. It also includes promoting changes in the healthcare system that improve health information, communication and informed decision-making, and dissemination and use of evidence-based health literacy practices and interventions.

Background

Consumer engagement involves actions taken by individuals to become better informed and more proactively involved in decision-making about their health and healthcare. Studies suggest that individuals who engage in the management of their own health can achieve enhanced self-management of their conditions, higher participation in preventative and healthy practices, and improved outcomes. Increasingly, digital health apps and patient portals are seen as powerful tools to engage individuals further in their health and healthcare. However, despite the fact that 90 percent of US health systems and providers offer online portal access to health information, only 30 percent of patients use a single portal feature. As consumers increasingly take advantage of digital tools outside of the clinical setting, certain challenges must be addressed.

Key Points

Enhancing consumer engagement could result in a number of benefits, including:

  • Increased empowerment of an individual (and their caregiver) in managing and understanding their health and healthcare;
  • Enhanced communication and shared decision-making between the patient and clinician;
  • Improved adherence to treatment plans, resulting in improved patient outcomes;
  • Reduction in duplicative testing and diagnostic procedures;
  • Improved accuracy and quality of a patient’s health information, which may reduce risks to patient safety; and
  • Lower overall healthcare costs for patients.

To realize the benefits associated with consumer engagement, a number of challenges must be addressed including:

  • Limited awareness by patients and their caregivers concerning their health data, including how to access the information itself and how to correct errors;
  • Limited adoption of digital health tools by individuals that can assist in the management of their health;
  • Lack of access to digital health technologies due to limited broadband internet access;
  • Lack of consumer trust in the privacy and security of health information that is maintained electronically;
  • Limited health literacy to empower individuals to become engaged in their health and healthcare; and
  • Inequities in the ability to leverage consumer-centric digital health tools on the basis of age, gender, race, ethnicity, language, geography, and income.

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