Access Living’s Guiding Research Principles and Expectations
Ethical, Equitable Research Partners and Projects
Prepared by Dr. Angel Love Miles, PhD, Healthcare/Home and Community-Based Services Policy Analyst, Access Living
Introduction
The independent living movement was built on the principle that people with disabilities are entitled to the same rights, options, and control over choices in their own lives as people without disabilities. Access Living seeks to partner in and support research which shares these principles through not only examining disability as a research topic, but by including the disability community as an integral part of the overall research process as much as possible. We are particularly interested in research that examines ways to improve service delivery and policy outcomes towards community integration and empowerment of people with disabilities and the communities in which they live.
There are many ways of meaningfully engaging the disability community in research. However, inclusive disability research is far from standard practice in academic, medical and other research institutions. This is due in part to the long history and continuing legacy of research discrimination, exploitation and abuse of people with disabilities, people of color, institutionalized populations and other marginalized groups. We wholeheartedly condemn these practices and expect a high standard of ethical research practices and expectations from our partners.
To help guide potential research partners in their consideration for how to equitably and ethically engage the disability community in their research project with Access Living, we share the following principles. We will evaluate all of our research partnership requests based on our availability, capacity, and the degree to which the projects described mirror the values and interests reflected in our organization’s purpose, mission, and vision (see “Who We Are”) and the research principles, expectations, and requirements outlined below.
We invite all potential research partners to submit an application. In the application, please describe the project and how it reflects the interests of Access Living and the principles outlined here as much as possible.
Questions? Contact Jerome Palliser at jpalliser@accessliving.org or (312) 640-2113.
Guiding Research Principles
- Commitment to identifying and addressing the barriers that impede meaningful disability community participation in the research process;
- A plan for ensuring that diverse interests and perspectives of the disability community are represented in the design, implementation and evaluation of research. This may include, but is not limited to including disability community members at the early stages of the project to help inform research questions and objectives; in ongoing meetings and decision making; in disability community members checking findings and interpretations; as co-researchers (e.g., facilitators of focus groups and interviews); and as full participants in all research activities.
- Commitment to accessibility in engaging the community. This includes planning and budgeting for accessibility and accommodation needs of people with disabilities who participate in and/or interact with your project. For example, when providing a public presentation, town hall or listening session about your research interests and their relationship to the disability community at an Access Living or other community venue, you must take responsibility for its accessibility. Avoid using excessive medical and research jargon. If complicated language is used, be prepared to provide clear explanations for its use, in order to ensure accessibility.
- Suggestions for providing accessible events include, but are not limited to, recommendations found in the following guides from Cornell University and Sins Invalid. See also the following resources on plain language: The Promise of Discovery; You may also need to work with Access Living to coordinate the accessibility needs of the event or project you are planning.
- Commitment to establishing productive partnerships between community members, Access Living, and researchers which will last beyond the life of the research project and will extend to more research and/or other relevant opportunities with an eye towards advancing long term systems and policy changes, and community empowerment;
- Commitment to translate research findings into actionable information to be shared and made accessible to research participants, as well as to service providers, policy-makers and other community members who can use the translated findings to inform their decision-making;
- Ensure that ownership of the data and materials produced will be shared in partnership between all partners in alignment with grant funding guidelines;
- Ensures that presentation of data and other information resulting from the research process or findings will be done in collaboration with all partners;
- Ensures that results and actionable information from the study will be shared with community members in multiple accessible formats, including plain language documents and community presentations;
- When appropriate, community participants will be noted as authors on publications or presentations of findings. Opportunities to coauthor and present findings should be shared and pursued with Access Living and research participants including academic journal publications, conference presentations, and media coverage;
- Has a research approach that uses a racial equity and overall intersectional lens (i.e. examines and considers the implications of relationships of multiple axes of power, identity and difference, including race, class, gender, ethnicity, sexuality, citizenship, age, ability etc.) in the development, carrying out and uses of the research;
- People with disabilities from diverse backgrounds are prioritized in the hiring process for any student or staff positions, assistantships, fellowships, internship or other paid opportunities that may become available for the research project;
- Coordinate with our communications team where appropriate.
Requirements
Research Compensation
We prefer research partners who involve Access Living in the research budget-making process if it has not yet been set, and/or openly share the full project budget when available, to ensure the appropriate compensation of Access Living and all project participants. Access Living will evaluate each project individually. We will work closely with the principal investigator and project coordinator to finalize details regarding the cost to engage with Access Living on research. The cost to partner on research with Access Living is dependent on the type and intensity of the project. Some factors that are considered when assessing the cost include: number of research participants requested for project recruitment; extent of resources required from Access Living, including staff time, intensity and length of the project; data requests and reporting requirements, type of technical and administrative assistance requested from Access Living, the cost of needed accommodations, use of Access Living facilities and space, level of interaction requested with staff and consumers, etc.
Research Process Transparency
A plan to ensure that expectations of the research process and outcomes for everyone involved must be agreed upon in advance. This includes expected time commitment, providing reasonable advance notice of project deadlines, and an agreed upon plan for ensuring their timely completion. It is important to avoid last minute requests since they impose extra work on our part and potentially for our consumers.
Research Subject Consent and Protections
All studies must obtain Institutional Review Board (IRB) approval of record from an FDA approved Human Subjects consent board if deemed relevant and related to human subjects and; documentation of approval from the IRB must be provided to Access Living once acquired, before any project can be approved to begin implementation. Again, Access Living especially welcomes requests from potential partners that approach Access Living before a study is designed and/or submitted for funding. This may also include the need for a community collaboration letter from Access Living as part of the IRB approval process at other organizations.
Interested in partnering with us?
We’re excited to hear about your project. To begin the research application process to partner with Access Living, you can fill out our Research Interest Form at this link.
Questions? Contact Jerome Palliser at jpalliser@accessliving.org or (312) 640-2113.