Background: Adults with intellectual and developmental disabilities (AIDD) experience higher morbidity and mortality than the general population, due in part to unmet healthcare needs and challenges in accessing basic health services. These disparities have been magnified during the COVID-19 pandemic, as AIDD experienced higher rates of infection, hospitalization, and death as well as greater challenges accessing testing, vaccination, and treatment for other health conditions, including through telehealth services. Almost no data exist about the perspectives of AIDD on these challenges and their needs. This is due in part to many researchers’ lack of knowledge regarding how to engage AIDD, and because many traditional engagement tools have not been tested or tailored to this population’s specific needs. There is a particular need for data in four understudied health areas affecting AIDD: 1) emergency medicine, 2) geriatric and palliative care, 3) telehealth, and 4) COVID-19 interventions, such as vaccination and testing.
Proposed Solution to the Problem: To meet these needs, the project team will develop IDD-TRANSFORM, a collaborative, sustainable partnership that is centered on the perspectives of AIDD. The project is a partnership between Stanford University School of Medicine, Special Olympics Northern California (SONC), Partners and Advocates for Remarkable Children (PARCA), and California Association on Intellectual and Developmental Disabilities (CA-IDD). This team will focus on engaging four key stakeholder groups: 1) adult patients with IDD, 2) caretakers of AIDD, 3) community organizations serving AIDD, and 4) clinicians/researchers serving AIDD, all located in the San Francisco Bay Area. Partners for AIDD/caretaker stakeholder recruitment are SONC and PARCA. The project team has identified local clinician/researcher stakeholders in each area of focus to participate in the Core Advisory Board (CAB).
Objectives: The objectives of this project are to: 1) develop and sustain a CAB of patients and stakeholders that centers the adult IDD patient perspective and will provide leadership for the planned engagement efforts, 2) implement and evaluate methodologically rigorous and sustainable participatory approaches to soliciting input from adults with IDD across a range of communication abilities and demographic, 3) collaboratively review data from participatory input approaches and systematically develop patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) priorities around healthcare access, communication, and shared decision making for IDD adults, and 4) create a sustainable virtual forum for education, discussion, and engagement of stakeholders on issues related to healthcare and PCOR for AIDD.
Activities: The activities will include: 1) regular meetings (twice per month) of the CAB, 2) review/selection of participatory input methodologies to maximize AIDD participation, 3) execution of engagement activities, 4) review of engagement data and generation of a white paper on AIDD PCOR priorities across the focus areas, and 5) dissemination of findings to stakeholder communities through monthly virtual forums.
Projected Outcomes and Outputs: The short-term goal is to understand the needs, challenges, and opportunities for AIDD in the four clinical areas. The medium-term goal is to leverage these data and this partnership to design future patient-centered outcomes studies to characterize these needs/challenges and develop and test solutions. The long-term goal is to disseminate and implement results from research into best practices for all AIDD. Specifically, this project will focus on developing priorities and recommendations for future specific CER studies to evaluate tools to address the needs of AIDD in the four identified understudied health areas.
Patient and Stakeholder Engagement Plan: The primary guiding principle of this project is equal partnership, including direct engagement, with AIDD patients themselves. A key objective of the project is to facilitate engagement with AIDD in ways that have traditionally been challenging or overlooked and address pressing topics in health care that significantly impact this population (emergency medicine, geriatric/palliative care, telehealth, and COVID-19 interventions). The CAB will drive the development, implementation, and analysis at all stages of the project. It will include AIDD, caregivers, AIDD community organization leaders, and clinician/researchers working collaboratively and using a shared leadership model.
Project Collaborators: To ensure representation across the spectrum of IDD, we will invite six AIDD with mild to moderate impairment recruited from the SONC Athlete Leadership Group, as well as two parents of AIDD with communication impairments who are unable to directly participate themselves. To include a diversity of professional perspectives, collaborators will also include: 1) three researchers from Stanford with expertise in stakeholder engagement and IDD, 2) three leaders of community organizations serving AIDD (SONC, PARCA, and CA-IDD, and 3) seven clinicians and healthcare administrators from emergency medicine, geriatric/palliative medicine, telehealth, and COVID-19 interventions.