Priorities/Recommendations: Patient (and Care Giver) Activation and Engagement

ONC Goal IV:Empower Individuals with Health IT to Improve their Health and the Health Care System (Goal IV discusses how the government is empowering individuals with access to their health information.)

Goal: Patient Centered Care, Consumer Engagement, Access to Health Information Technology

Rationale: The Center for Advancing Health defines Patient Engagement as "actions individuals must take to obtain the greatest benefit from the health care services available to them." Patient Activation is the process of educating and enabling patients to take an active role to realize the benefit of patient engagement. Health outcomes are enhanced when patients and their caregivers become active participants in the planning and coordination of the individual’s health care (citation).

In order to support patients to become activated and engaged health care consumers, they require education, information, skills to navigate available resources, as well as the confidence that these efforts will impact their health and ability to impact the health care services available to them. There are a wide range of patient activation and engagement strategies including, but not limited to, patient education programs to improve the understanding of a disease state and its optimal management strategies, services and supports to improve medication usage, programs to help support smoking cessation and other positive lifestyle modifications, as well as clinical information sharing to help improve the provider-patient encounter.
Why is this critical for LTPAC...
Need to work in collaboration with caregivers - need to have access and knowledge of information available

  • Review measures of patient activation (e.g. to determine which interventions are most successful and which populations are most amenable to these.
  • Describe the elements of effective patient activation and engagement in LTPAC, and how technology, especially information exchange, can enable this process.
  • Understand successful engagement strategies for people with limited decision making capacity, impaired cognitive function, language and cultural barriers, and functional impairment.
  • Describe the role of health care advocacy and surrogacy while still enforcing patient right to information security and privacy.
  • Describe additional elements required to achieve patient engagement, in the LTPAC community, as well as their responsible parties and their care givers and to and understand their health status including their prognosis, and to understand and actively participate in their care and wellness plan intended to realistically optimize their outcomes based on their individual goals.
  • Describe barriers to patient-centered, patient-directed, and seamless longitudinal care in the LTPAC and options for how these might be addressed/overcome (describe best practices?)
- Focus on key words for the objective that are linked to strategies.
- Should we endorse the use of patient activiation measures (PAM) in LTPAC?
- Patient and family satisfaction measures

- Use of PHR (both by patients and providers)
- Leverage mobile technology and leverage secure communication (e.g. Project Direct)
- Family portals for providers
- Shared planning tools for care/wellness planning
- Telehealth, telecare, patient monitoring should be leveraged; facilitated calls with their healthcare professionals to ensure compliance
- Advocate for the development a process to capturing patient and family satisfaction measures (Could an AHRQ CAB survey? or advocate for a custom survey tool? Need to have a conversation around survey content and reliability to adequately capture patient activation and engagement)
- Look at quality measures (very carefully since they are fragmented - MDS/five star driven, not interoperable, not incorporated into decision-support tools; needs to use HIT)
- Look at consumer outcomes in the ACO space (LTCQA is also looking at measures in this space)
- Submit Pledge to ONC consumer initiative
Care Process Improvement: A number of strategies have been developed to increase activation and engagement.

Technology Enabled Patient Activation: A number of events have focused on consumer and caregiver role and health IT adoption, functionality and utilization

Article by JL

  • Consumer Event to engage consumers in their healthcare (Putting the I in HealthIT)
  • CLIA/HIPAA modified for patients to access their lab results from the lab
  • ONC sponsored call on Care Planning and sharing of documents between providers and with patients.
  • o Decide whether the document would be advanced to ONC and HIT policy committee
  • § Larry Garber (MA IMPACT) identified a gap in home care decision support (need to look into)
  • Integrating products
  • To communicate (limited language proficiency)
  • Aging in place
  • Technologies that enable care givers (to do what?)
  • Communication technologies to help manage chronic disease
  • Public/private funding
  • Use of social media for patient activation, information sharing
  • Use of multi-disciplinary care teams which include a patient advocate or family member
  • Use of remote monitoring and telehealth information to allow family/caregivers access to information about loved one’s help (with permission of patient)

Suggested Speaker(s) at Summit: