Standards for public agencies

2020 Edition

Client Rights (PA-CR) 3: Research Protections

An agency that participates in or permits research involving service recipients establishes the right of individuals to refuse to participate without penalty and guarantees participants’ confidentiality.

Interpretation

All research involving service recipients is conducted in accordance with applicable legal requirements. For purposes of PA-CR 3, research includes all forms of internal or external research involving service recipients except internal program evaluation and outcomes research, and educational projects carried out by students and interns as part of their professional training. 

Agencies serving children and youth who are wards of the state are advised to consult Code of Federal Regulations 45 CFR § 46.4.09 and 21 CFR § 50.56. These regulations specify who can participate in research and require that an advocate must be appointed for each participating child. 

 
NA The agency does not permit research involving service recipients.

NA State Administered Agency Regional Office
2020 Edition

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Purpose

The rights and dignity of clients are respected throughout the agency.
1
Full Implementation, Outstanding Performance
A rating of (1) indicates that the agency's practices fully meet the standard and reflect a high level of capacity.  
  • All elements or requirements outlined in the standard are evident in practice, with rare or no exceptions: exceptions do not impact service quality or agency performance. 
2
Substantial Implementation, Good Performance
A rating of (2) indicates that an agency's infrastructure and practices are basically sound but there is room for improvement.
  • The majority of the standards requirements have been met and the basic framework required by the standard has been implemented. 
  • Minor inconsistencies and not yet fully developed practices are noted; however, these do not significantly impact service quality or agency performance.
3

Partial Implementation, Concerning Performance
A rating of (3) indicates that the agency's observed infrastructure and/or practices require significant improvement.  

  • The agency has not implemented the basic framework of the standard but instead has in place only part of this framework.  
  • Omissions or exceptions to the practices outlined in the standard occur regularly, or practices are implemented in a cursory or haphazard manner.  
  • Service quality or agency functioning may be compromised.  
  • Capacity is at a basic level.
4
Unsatisfactory Implementation or Performance
A rating of (4) indicates that implementation of the standard is minimal or there is no evidence of implementation at all.  
  • The agency’s observed administration and management infrastructure and practices are weak or non-existent; or show signs of neglect, stagnation, or deterioration.
Self-Study EvidenceOn-Site EvidenceOn-Site Activities
County/Municipality Administered Agency, State Administered Agency (Central Office), or other Public Entity
  • Human subject research policy 
  • Human subject research procedures
  • Informed consent form template
State Administered Agency (Regional Office):
  • Evaluated in the Central Office only
County/Municipality Administered Agency, State Administered Agency (Central Office), or other Public Entity
  • Signed consent forms for research activities
  • Minutes from research proposal meetings for the previous six months
State Administered Agency (Regional Office)
  • Evaluated in the Central Office only
County/Municipality Administered Agency, State Administered Agency (Central Office), or other Public Entity
  • Interviews may include:
    1. Agency head
    2. Relevant personnel  
    3. Persons served 
State Administered Agency (Regional Office)
  • Evaluated in the Central Office only

Fundamental Practice

PA-CR 3.01

The identity and privacy of participants is safeguarded in all phases of research conducted by, or with the cooperation of, the agency including, but not limited to, masking the individual identify of research participants in all statistical analyses, reports, summaries, and case examples. 
 

PA-CR 3.02

The agency has a mechanism to review research proposals involving service recipients, such as a human subjects committee or an internal review board that reports to the agency head or senior management.

Fundamental Practice

PA-CR 3.03

Research participants, or a parent or legal guardian, sign a consent form that includes:
  1. a statement that he or she voluntarily agrees to participate;
  2. a statement that the agency will continue to provide services whether or not he or she agrees to participate;
  3. an explanation of the nature and purpose of the research;
  4. a clear description of possible risks or discomfort, as applicable; and
  5. a guarantee of confidentiality.
Note: Please see the Case Record Checklist for additional guidance on this standard.