Monitoring Technology: Informed Consent and Individual Privacy
Monitoring Technology: Informed Consent and Individual Privacy When utilizing monitoring technology, the issues surrounding informed consent and individual privacy must be accounted for. Informed consent must be obtained for all individuals affected by the proposed monitoring technology as people have a right to know what is being used in their environment and what information may be captured.
Monitoring technology by definition will collect information about a person’s actions. When developing a solution, how a person’s privacy will be impacted needs to be discussed and considered. A solution should be focused on addressing a person’s support needs and limiting the capture of information which does not help meet that end.
Here are some best practice considerations to ensure success in the use of monitoring technology:
- Everyone has the right to make an informed choice and to have all of the information available to them to make a truly informed choice.
- All individuals who may be impacted by the technology should be provided information on the technology and consent must be obtained where identifying information is collected.
- An individual’s choice will be honored and respected.
- It is important and imperative to educate and provide information to people on monitoring technology options.
- Everyone has the right to privacy.
- The informed consent process should involve the interdisciplinary team and the case manager or care coordinator.
- Even where informed consent is not required by law, following these steps for discussion, participation, and informed consent is a best practice.
Q1: What types of privacy considerations need to be made?
A1: Cameras should not be placed in areas where people are to expect a reasonable degree of privacy. Typically this includes bedrooms and bathrooms. Sensors can be utilized in all areas of the house to help ensure people’s safety. People do have the right to know when they are being monitored and they need to be informed how the system being implemented is collecting information and how that information is being used.
Q2: How does the informed consent process work when monitoring technology is used?
A2: In alternative adult foster care licensed homes, the provider must obtain signed consent from the legal representative to use monitoring technology. This consent may be part of the placement agreement, individual service agreement, or other plan, or it may be a separate form. Individuals being supported are entitled to a copy of the consent.
When supporting people in their own home, an informed consent may not be required, but it is important to help people understand their rights and ensure they provide their consent to use the technology before it is used in their home. To help people make an informed decision, they should be encouraged to include people who know them to be part of the decision making process. This might include family, friends, legal representatives, advocates, guardians, the interdisciplinary team and case managers or care coordinators.
Informed consent is a process in which the provider provides information to the person being served regarding the potential uses of the technology, risks and benefits, and the plan to ensure the person’s privacy and safety. This is typically facilitated using a written disclosure form which is signed by the person, their legal representative, and case manager.
When Monitoring Technology is funded by the HCBS waivers, DHS has provided informed consent forms for the participant and any affected parties. Links for the documents on the DHS website can be found below:
Q3: What information should be provided to ensure people can make an informed consent decision?
A3: Providers should ensure the following are discussed with the person to be served:
- Risks, benefits, and limitations of the technology being considered.
- Alternative ways to provide support which may also be appropriate.
- How caregivers are trained in using the technology.
- How information is collected and stored.
- How a person’s privacy will be ensured.
- Where necessary how long it will take for a caregiver to respond.
- What backup systems have been put in place should the technology fail.
- Ownership and portability of the technology being considered.
Q4: What are common risks which should be accounted for?
A4: Technology can provide a number of supports for people’s needs, and risks associated with the use of technology will often be similar to those when a caregiver is present and providing care to multiple people. The team will want to discuss in the planning process the technology being utilized and the anticipated response time from a caregiver. Planning on how to address the following should be considered:
- What to do in the event of a change in condition (illness)
- What to do if a medication is needed.
- What to do if a person falls and needs assistance.
- How to address any wandering or elopement concerns.
- Whether there is any risk associated with other people in or near the person’s environment.
Some of these areas may need to be planned for differently than others. It depends on the proximity of the caregiver and the needs of the person being supported.
Q5: How frequently is informed consent given?
A5: Before any monitoring technology or remote support is implemented, informed consent must be obtained. If a person’s needs change and additional supports are to be implemented, the consent should be reviewed and adjusted as appropriate. Consent for monitoring technology expires 12 months after it has been signed and must be reviewed.
Q6: Can a provider require a person to utilize monitoring technology?
A6: When implementing remote monitoring for existing people being supported, a provider cannot require all individuals to utilize the support. If all people being served at the location do not agree to utilize the monitoring technology, the provider cannot move forward. Once the technology is established, then it can be a requirement for anyone new moving into the location to utilize the technology in place. If a person originally consents and would then like to withdraw their consent they may need to look for another location for support.
Q7: Can people agree to use some monitoring technology by not in all areas?
A7: Providers should discuss with the people they are supporting and their teams what the support needs are and then seek technology to help support those needs. People may be comfortable using technology for some areas of support and not others. Monitoring technology should only be implemented where needed to provide the identified supports. In some cases, it may not make sense to implement only parts of a system if it doesn’t assure the safety and support needs of the person. These discussions should be done in collaboration with the entire team and a decision reached on how best to move forward.
Q8: When converting an adult foster care home to using remote supports for overnight supervision, can a provider require those who don’t want to use it to move out?
A8: Informed consent is required from all current individuals receiving support prior to implementing remote supports. If one individual withholds their consent then the provider cannot move forward and the individual cannot be required to move from their home.
If all individuals have consented and then one individual needs to change their consent or supports a request to discontinue utilizing remote supports should be evaluated along with the needs of the other individuals in the home. If remote supports continue to be appropriate for all other individuals then the person needing increased support may need to look at other locations to receive their supports. For those living in their own home, they can withdraw their consent and discuss with their providers what other options might be available for them along with the potential consequences of those options. Other options might include alternative methods of remote monitoring, caregiver support, or selecting other living arrangements.
Q9: How does one individual’s use of technology affect others in a group living environment?
A9: If monitoring technology is only used in the individual’s private space and/or bedroom, there is no need to inform or seek informed consent from the other individuals or their teams. However, whenever personally identifying information is collected and analyzed for other individuals living in the home, informed consent is needed. Whenever cameras are used in a public living area informed consent is needed. In general, when monitoring technology is used in common areas of the home, it is best practice to inform all individuals and their teams of the existence of the specific technology without disclosing another individual’s care plan. This is the case even when the technology doesn’t collect any personally identifiable information.
Source: Adapted from the Monitoring Technology Best Practices developed by the Monitoring Technology Workgroup.