By Dorothy Bisbee, ACO Research Committee Member
As an ADHD coach, you may wonder how you can contribute to research on the efficacy of ADHD coaching. Could you use survey results or other data from your coaching in research? Maybe. But first you should know a bit about human subject research. You may be legally or ethically bound to follow certain procedures, such as increasing privacy safeguards and obtaining informed consent from research subjects. Some information to help you get started follows below.
Informed consent basically means a “yes” from a volunteer who understands the risks and benefits of a situation before volunteering. In human subject research, letters or statements of informed consent are used to ensure respect for subjects’ autonomy, wellbeing and privacy.
Institutional Research Boards, or IRBs, are committees that review proposed research to ensure compliance with the federal regulations. There are university IRBs, hospital IRBs, and independent IRBs as well.
The NIH Office of Extramural Research provides a free on-line tutorial called Protecting Human Research Subjects. The tutorial can be completed in less than an hour. It covers informed consent and other issues, and provides a certificate of completion.
US Federal Law: the Common Rule
The Federal Policy for Protection of Human Subjects, also called the “Common Rule,” is found in federal regulations at 45 CFR Part 46, Subpart A. Most federal, academic, medical and institutional researchers are required to comply with the Common Rule.
Coaching Association Ethics Codes
Coaches may not technically be subject to the Common Rule in many cases, but their ethics codes tend to incorporate its principles. Here are some examples:
International Coach Federation (ICF) Ethics Code Section 1(6) states:
I will conduct and report research with competence, honesty and within recognized scientific standards and applicable subject guidelines. My research will be carried out with the necessary consent and approval of those involved and with an approach that will protect participants from any potential harm. All research efforts will be performed in a manner that complies with all the applicable laws of the country in which the research is conducted.
Part 6 of the International Association of Coaching (IAC) ethics code states:
6.02 Conducting Research
(a) Approval or consent from research participants or hosting organizations shall be gained, unless (b) below holds true.
(b) Approval or consent … is not required only in special cases such as research with anonymous questionnaires or naturalistic observations.
(c) Participants will be informed about the research and its anticipated use(s), in language that is understandable to the general public.
(d) Where applicable, research participants shall be suitably protected from adverse consequences of participating in the research, including (but not limited to) potential consequences of withdrawing from the research.
(e) If inducements are offered to research participants, such inducements shall not be excessive or inappropriate.
The Professional Association of ADHD Coaches (PAAC) Code of Ethics places particular emphasis on ensuring that clients are not coerced into becoming research subjects. Section 6.4 cautions:
[PAAC Certified] Coaches who are involved in research projects do not exert any pressure for clients to participate in said projects or engage in any behavior that would convey to the clients the feeling or impression that the coaching that they will receive is related to their decision of whether or not to participate in said research projects.
All of these ethics statements are consistent with the Common Rule.
Obtaining Informed Consent
A letter is the most common means of obtaining informed consent from research subjects. At a minimum, such a letter should be clearly and simply written, and do the following:
- Describe the research and what subjects will be asked to do;
- Identify the risks (including risks to privacy and reputation) subjects accept;
- Describe possible benefits of the research;
- Remind clients that participation in research is not a requirement for coaching;
- State that subjects can withdraw consent to participate in research at any time;
- Tell how subjects’ personal information and data will be protected; and
- Give contact information in case the subject has questions.
For further advice and sample language, coaches can refer to university IRB publications like a University of Montana document called “Informed Consent” filed under “Templates & Examples” at http://www.umt.edu/research/complianceinfo/IRB/forms.aspx.
Even if they are not actively involved in research, some coaches may wish to inform their clients of the possibility that their data may be used down the road. Sample language can be found in counseling and psychology consent forms such as these:
Coaches may ask whether informed consent is really needed if they are using simple surveys that benefit their clients and cause no psychological stress. There are two common exemptions that may apply if the clients’ personal information is completely separated from the data:
- Anonymous survey research: The Common Rule exempts survey research where the data cannot “be identified, directly or through identifiers linked to the subjects” and disclosure of the data could not “reasonably place the subjects at risk of criminal or civil liability or be damaging to the subjects’ financial standing, employability, or reputation.” 45 CFR 46.101(b)(2).
- Existing data. The Common Rule also exempts “Research involving the collection or study of existing data, documents, [or] records, … if the information is recorded by the investigator in such a manner that subjects cannot be identified, directly or through identifiers linked to the subjects. 45 CFR 46.101(b)(4).
Before deciding that one of these exemptions applies, a coach should carefully consider factors like the number of clients and surveys involved, and the chance that something like handwriting or specific answers could reveal a client’s identify. Even with a large number of clients, changing or deleting names is never enough.
The protection of human subjects in research is a complex topic. Coaches using client data for research will need familiarity with the basic concepts to determine whether prior informed consent is needed and, if not, what other steps are appropriate to ensure client privacy and the ethical use of information.
For Further Information
Coaches interested in learning more can start by taking the NIH training mentioned above, by talking with more seasoned investigators, or by clicking on sources referenced in this article. Also recommended is an Australian Association of Social Workers publication called Ethics and Practice Guideline – Using client information for research and educative purposes. This guideline overviews why informed consent matters, gives examples of when a practitioner may wish to use client information in research, and suggests procedures for obtaining informed consent and/or depersonalizing information to ensure client anonymity. (August 2013, http://www.aasw.asn.au/document/item/4678)
Call for Volunteers
The ACO Research Committee is considering a subcommittee to help ACO focus on the action-oriented parts of research such as:
- Recruiting ACO coach-investigators;
- Supporting new research studies, grants and peer-reviewed articles; and
- Developing institutional collaborations.
If you are interested in joining this effort, please contact Joyce Kubik.
NOTE: This article should not be read as legal advice or a comprehensive guide, and it does not necessarily represent the views of the ACO or its Research Committee. This review was written as a service to ACO members by Dorothy Bisbee, JD, CCMC, PCC, of the ACO Research Committee and represents the perspective of that author. You can contact her at DorothyBisbee.com