Table 6.

Summary of Providers’ Responses to the Survey Questions

Question/ Responses	Comments
Do you feel that the current broad consent model of either “sharing all clinical information with all providers” or “sharing no clinical data with any provider” for care or for research matches patients’ desires? (Q3) Most (7/8) providers feel that the consent process is broad and does not reflect patient’s needs.	“…about a third [of patients]do not want their information in a data base for coordination of care. Almost all are ok with sharing minimal information with their PCP.”
Do you have past experiences of patients complaining that the current consent process is too broad and that they would like more control over what they share and with whom? (Q4) Half of the providers (4/8) responded that patients usually do not complain and accept the current broad consent forms.	“They [patients] rely on clinicians to help look out for their best interest.”
Do patients ask during the consent process to be informed about or wish to discuss possible positive and negative effects or consequences of sharing medical information for care or for research? (Q5) Most (7/8) replied that patients rarely ask for effects or consequences.	“Very rarely. They [patients] generally want their medical providers to be on the same page with each other. Especially if there are medications involved in treatment.”
Besides the information contained in the consent form used for asking patients permission to share their data for care and research, do you provide any additional resource to educate patients on their choices (video, pamphlets, web site, etc.)? (Q6) Most (6/8) replied no.	“…printouts attached to the electronic consent form, which have a bit more information that they can read up on or research. But in general it’s just the consent/release form that they sign and receive a copy of.”
What are some of the most common reasons given by patients who decide to restrict sharing of their clinical data for care or for research? (Q7) Stigma (4/8), fear of misuse of information (2/8) and loss of privacy (2/8) are common reasons given by patients.	“Clients [patients] do not want the information made available to others because of the stigma of having a mental health diagnosis.” “…if medications were restricted by one provider they [patients] don’t want that influencing another provider’s decision to prescribe.”
What are some of the most common reasons given by patients who decide to share their clinical data for care or for research? (Q8) Coordination of care (2/8), improve quality of care (2/8)	“..they [patients] often want everyone to be on the same page, especially with medications. They don’t want to “start over” as often there are years of treatment provided elsewhere, and they want their new provider to be informed.”
Do you think that (some of) your patients could be subject to bias when treated by other providers if the provider knew about the patient’s behavioral health conditions or other sensitive information in their history? (Q9) Yes (8/8)	“There could be a bias if a provider was aware of a client using substances which may explain the behaviors.”
Do you think that a patient’s care would be negatively affected if not all the clinical information is provided to other health care providers outside BHINAZ? (Q10) Majority (6/8) felt that care could be negatively affected.	“Possibly. For example not to include their [patients] substance use history simply because they are in recovery may be a problem for a medical provider prescribing, or another therapist missing signs of relapse.”
Do you have suggestions on how to best educate patients on the positive/negative effects and consequences of restricting or permitting sharing of their clinical information? (Q11) Verbal explanation (3/8), print-outs (2/8), educating clinicians (1/8), multi-media options (1/8)	“the more important factor is educating clinicians. For the most part, clients will sign whatever is put in front of them. It is a clinician’s job to be the gatekeeper and help clients to understand both positive and negative implications of their decisions.” “Possibly Multi-media options — websites to read, or to show a short video-taking into consideration all learning types.”
Do you think that your institution could benefit from knowing more about patients’ choices on data sharing? (Q12) Yes (6/8) Uncertain (2/8) How can your institution benefit? (Q12) Understanding patients preferences (4/8) Educating clinicians (2/8)	“Understanding our client’s preferences would foster understanding, trust, and respect, perhaps lead to agency changes to better match client preferences, and in turn would increase the level of integrity of the agency.”
Do you anticipate barriers to implementing an electronic consent process that would give patients more options on the types of information they wish to share and with which other care providers? (Q13) Time (3/8), educating clinicians (2/8), educating patients who have minimum knowledge of computers(2/8)	“The barriers envisioned would be time. Intake form consists of approximately 11 pages of intake questions in addition to another 8 forms that need to be explained and/or signed. Clients are generally overwhelmed and anxious by the process to some degree. Having another form for the client to complete seems like a lot.” “If they [patients] are given more choices it could complicate coordination of care and can be more time consuming. Patients may want to withhold consent of care yet not realize those implications in providing thorough care and could limit amount of assistance.”