By Carli Friedman, CQL Director of Research
In the Personal Outcome Measures® the indicator People Decide When to Share Personal Information fits into the factor My Relationships. One may wonder why it belongs in this factor. People Decide When to Share Personal Information fits into My Relationships because “it depends on a level of trust with others, that is ones’ relationships with them – it is about being able to control how the information is shared and most importantly who it is shared with. It is not uncommon for people with disabilities to not be given the option of who sees their personal files; however, when services are appropriately person-centered they should have the ability to do so” (Friedman, 2018, p. 355).
People with disabilities should be able to control how organizations collect and share their personal information, yet this is often not the case. The purpose of this PORTAL article is to explore the indicator People Decide When to Share Personal Information in more depth. To do so, we analyzed over 1,000 Personal Outcome Measures® interviews from PORTAL completed by certified interviewers in 2017.
Disparities: Knowing What Information Is Collected
Findings revealed less than half of people with disabilities in the sample (49.5%) knew what personal information their provider organization collected about them. As only about one-half of the 1,000 people with disabilities in our 2017 sample knew what personal information providers were collecting about them, we were interested in exploring if there were any disparities that could be targeted to ensure more people know what information providers collect.
We ran a binary logistic regression model to do so. Findings revealed significant differences across age, primary communication method, decision making authority, residence type, average hourly support, and disability type.
According to our findings:
- People with autism were 2.0 times less likely to know what information was collected about them compared to people with other disabilities.
- People with intellectual or developmental disabilities were 1.6 times less likely to know compared to people with other disabilities.
- People aged 65 to 74 were 2.2 times less likely than people aged 18 to 24 to know what personal information providers were collecting about them.
- People who primarily used sign language to communicate were 11.3 times less likely to know what personal information providers were collecting about them compared to people who primarily communicated through verbal/spoken language.
- People with full/plenary guardianship were 1.7 times less likely to know what personal information providers were collecting about them compared to people with independent decision making.
- People who received 24/7 around the clock support were 3.0 times less likely to know what personal information providers were collecting about them compared to people who received support as needed (on call).
- People who lived in provided owned or operated homes were 2.9 times more likely to know what personal information providers were collecting about them compared to people who lived in their own homes or apartments.
By targeting these disparities, organizations can ensure people with disabilities know what personal information is collected about them. Doing so is one of the first steps in supporting people to decide when and how to share personal information. Organizations cannot appropriately know people’s preferences for confidentiality, receive consent for releasing information, or respect people’s wishes about sharing information if the person does not know what personal information is collected about them in the first place.
Regardless of people’s support needs or decision-making authorities, organizations can put individualized supports in place to help people with disabilities know what personal information is collected about them and can decide when to share personal information. Ultimately, supporting people to decide can be an issue of respect. In fact, our analysis found people who are respected (outcome present) are 8.3 times more likely to receive organizational supports to decide when to share personal information than those who are not respected.
Likelihood to Receive Organizational Supports for Decide When to Share Information
Core practices that support a person-centered approach to personal information for organizations – principles for organizations – include:
- “Request only the information necessary to provide supports and/or services;
- Limit access to people who need information and to others identified by the person or legally authorized representative;
- Ensure that staff are knowledgeable about confidentiality laws; and,
- Make personal records available to people on request and assist them with interpretation, as needed.” (CQL | The Council on Quality and Leadership, 2017, p. 61)
- Friedman, C. (2018). The Personal Outcome Measures®. Disability and health journal, 11(3), 351–358.
- The Council on Quality and Leadership. (2017). Personal Outcome Measures®: Measuring personal quality of life (3rd ed.). Towson, MD: Author.