Survey re: online training for primary care research - Consent Form

[A Former User]

This is a consent form for those who are keen to participate in this survey.

Targeted to patient/ family members who are interested in primary health care research in Ontario -- although really anyone in Canada can and should consider this.

This is for the development of an on-line training program in Primary Health Care Patient-Oriented Research.

[CONSENT FORM](http://patientadvisors.groupsite.com/file_cabinet/files/895165/download/LetterofInformation PEinPHCR Dec 23 2017.docx?m=1513964538 "Consent form for survey")

[A Former User]

Interesting that they are compelled by the Research Ethics Board (REB) to require us to sign a consent form for what is really a market research type of question.

Sometimes the research world seems entirely too constipated. Thoughts?

[A Former User]

thx for this, Alies.

Market research may sometimes do a lot of things that may not be considered appropriate in a patient care setting. It is likely that Amanda and her team at UofW are covering all their bases in case some of their survey participants are not so well informed about the health care system as others.

Were you going to post the link to take the survey or was Amanda just lookng for feedback on the 'paricipant consent form' at this point?

kind regards

anita l-l

[A Former User]

Anita, I can only post the consent form since I presume they will send the link to respondents only given the need for the consent process.

I have done other efforts like this that did not use consent. This is the first time and I do think it overkill. I have sent my comments on to them to pass to the REB in hopes that in future they not be so constricted. Alies

[A Former User]

I understand your position, Alies. thx for providing your feedback to the researchers on this survey study on the road to developing an online training pgm on patient oriented research.

Some ethics boards can be more stringent regarding consent for participation than others (especially when the study survey involves mainly adult patients who are considered among the walking well). Most Canadian university based researchers try to stay on top of their local ethic board requirements in order to avoid any misunderstandings from participants down the road.

If a goal of the study survey (in this case) is to involve patient participants who may currently be under care (which is great) then perhaps it may be advisable to obtain more formal individual participant consent. In the end it is really up to the ethics board providing consent.

Even Health Canada's Research Ethics Board (HC-REB) still requires local jurisdictional ethics board approval as part of their own national level processes. As you can imagine ethics approval alone can be a major portion of some health research studies.

anita l-l

[A Former User]

I have been asked by the team from UWO lead by Amanda Terry to resend the form posted by Alles (above accessed by clicking on CONSENT). This form was initially circulated to all stakeholders. The largest group to respond are the researchers and the fewest responses are coming from patients and caregivers. It is our hope to have a larger proportion of this key group articulate and identify their priorities/needs and goals in helping to shape the content of the online training program. Your help in realizing this goal is appreciated. If you are aware of any additional organizations that would be willing to facilitate getting this request out to their membership the team from UWO would grateful.

[A Former User]

In addition I would like to add that the University did receive approval from the ethics board for this request to be circulated.

Dear Lorraine,

Yesterday after our Patient Engagement in Primary Health Care Research meeting we received approval from Western's Research Ethics Board to distribute our survey about the knowledge and information required for the conduct and use of patient-oriented research. I am writing to you today to ask if you could please distribute the email below (with the link to the survey and the letter of information attachment) to the networks that you are a part of that you feel it is appropriate to circulate to?Thank you so much for your assistance.

Sincerely,

A manda

[A Former User]

Lorraine, how did the response turn out? Is this request closed for now? Alies

[A Former User]

We had a great response. People can still respond if they want to contribute. The largest response was from researchers and the smallest from patients. Because of your support we had over 60 responses before Christmas in addition to what we already had submitted. Thank you