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Hepatitis C research: 30.00 incentive, Get involved today

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David Rowlands
Member
Posts: 35
Hepatitis C research: 30.00 incentive, Get involved today
Posted on: January 15 2015, 11:05 am

For people living with hepatitis C or treatment experienced

We are currently conducting research in UK with individuals diagnosed with Hepatitis C.

Main research topics include:
Understanding patient diagnosis
Adjustments to lifestyle
Treatment satisfaction
Accessibility to online / offline support

Incentive:
The research involves completing a 30-60 minute online survey and as a token of appreciation for your time, you will receive 30 Amazon.uk gift card. You will be able to complete this in breaks.

Results:
Research will be used for raising awareness and developing new treatment and management strategies so it is a unique opportunity for patients to influence healthcare decisions.

Link to survey
http://www.design-redefined.co.uk/research/4587954435

If you would prefer a phone interview please email david@design-redefined.co.uk or contact me on 07519 774840 where this can be arranged.

I found taking part within this research informative and engaging. It was an opportunity to reflect on my  diagnosis, lifestyle, treatment and care.

David Rowlands
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Simon Collins
Global Moderator
Posts: 651
Re: Hepatitis C research: 30.00 incentive, Get involved today
Reply #1 on: January 15 2015, 03:56 pm

Hi David

Although it is good to see you posting, as with the survey from Elias recently, this looks like research for a drug company.

If this is the case, then it needs to be clearly stated. Pharma companies use community studies for their marketing and some people on the list might not realise the funder.

Also, if you are being paid as a consultant for this - rather than doing it voluntarily - this also needs to me clear for transparency.

I'm hoping the SG will clarify a policy on this but these two points are standard for all research.

thanks

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Silvia Petretti
Steering group
Posts: 286
Re: Hepatitis C research: 30.00 incentive, Get involved today
Reply #2 on: January 16 2015, 03:31 pm

Thanks Simon I agree with you that all collaboration with research needs to be clarified.  Please Davis could you clarify  if this is done on behalf of any pharmaceutical company, what is the scope of the research,  and what your role is? 

The steering group will finalize the wording of the policy next week, but it will definitely include the following criteria:

need of transparency on who is doing the  research,
 explaining how it  will benefit people living with HIV,
what its objectives are,
how do the researchers plan to share their findings with people living with HIV.

Thanks,

Silvia Petretti
UKCAB Chair
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David Rowlands
Member
Posts: 35
Re: Feedback
Reply #3 on: January 19 2015, 09:10 am

Dear Simon and Silvia

Thank you for your feedback to my below posting of a research project on the 15th January.

On my website it does clearly say "Working in partnership with Opinion Health.

There is also a disclaimer note on the landing page of the survey which reads

Opinion Health perform all their market research in accordance with the ABPI, MRS and BHBIA codes of conduct regarding anonymity, confidentiality, and the ethical practice of market research - the aim of this market research is to gain your views and is not in any way promotional. We are also fully compliant with the Data Protection Act. Any information you disclose will be treated in the strictest confidence and the results are pooled so no answers are attributable to any individuals. You have the right to withdraw from the survey at any time during the interview process and to withhold information as you see fit. The company commissioning this research does not hold or see any information regarding respondents and your identity will always remain anonymous.

The copy on my website and the survey covers the x4 point criteria Silva has mentioned in her post. If the SG group would clarify a policy on research, this that would be great.

I can confirm that Opinion Health has asked me to recruit for this research and it is a  paid role. I totally agree that we should be transparent and is should be tightened up.

On the 21st October 2013, Silva you posted through the UK CAB an online survey focusing on women accessing GP services. This doesn't seem to mention who is funding or supporting the survey.

I would also suggest that people who are going to different events and conferences who are being paid or funded from pharmaceutical industry declare this when writing online blogs as this needs to be more transparent also.

Finally Silvia my name is David and not Davis....  Also the research is not about HIV it's Hepatitis C. I am sure you were tried this morning when you write the email at 3.31am

I hope you both are having a good start to the week

David Rowlands
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Silvia Petretti
Steering group
Posts: 286
Re: Hepatitis C research: 30.00 incentive, Get involved today
Reply #4 on: January 21 2015, 04:40 pm

Dear David,

Thank you for your reply and for taking the time to explain about this market research. As I explained the UKCAB Steering group is still in the process of developing a policy.  I apologize for misspelling your name. I often respond while on a bus,  moving from one part of London to another to attend meetings etc. predictive text can easily make you say some funny things and misspell people's name.

The survey I publicized last October around access to primary care for women living with HIV was done by Positively UK in collaboration with the Women and Health Equality Consortium (WHEC), which is a partner of the Department of Health. WHEC aims to address gender aspects of health inequalities. The results of the research were published in the report Women's Health Women's Voices, available here http://www.whec.org.uk/wordpress/wp-content/uploads/2011/04/access-to-primary-care.png .
It is very clear to me that this kind of research is extremely important to improve services for people living with HIV and the report has bee widely distributed among people living with HIV and also among health care practitioners and commissioners.  It is not clear to me from the website you shared how the results from the market research will be shared with people living with HIV.

It is not within the scope of the UKCAB to check on people's private blogs, or how people who blog get funded to go to conferences. People who blog, including myself, are just running opinion pieces on their personal experiences, and at least do something to report and share what they have learnt from attending conferences and meetings to the wider community.

The research policy which will be agreed by UKCAB Steering Group will be shared on this forum soon.

Best Regards,

Silvia Petretti
UKCAB Chair





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David Rowlands
Member
Posts: 35
Re: Hepatitis C research: 30.00 incentive, Get involved today
Reply #5 on: January 21 2015, 04:52 pm

Silva

Thank you for your feedback, I hope your well and having a good start to 2015

Enjoy the rest of your week

Regards

David
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Scott Butler
Member
Posts: 2
Re: Hepatitis C research: 30.00 incentive, Get involved today
Reply #6 on: February 2 2015, 06:10 pm

THe vouchers for this survey have not been forthcoming from Opinion Health and they are not repsonding to emails regarding the matter.
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David Rowlands
Member
Posts: 35
Re: Hepatitis C research: 30.00 incentive, Get involved today
Reply #7 on: February 2 2015, 07:07 pm

Hi Scott

Hope your well and thank you for your email you sent me this morning

I have contacted opinion health with your concern and I am waiting on a  response from them. this does take some time,

If no response, I will follow this up first thing in the morning with a telephone call

I am sorry for the delay with this for you and I will do my very best to forward you comments onto opinion health

David
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David Rowlands
Member
Posts: 35
Re: Hepatitis C research: 30.00 incentive, Get involved today
Reply #8 on: February 3 2015, 10:39 am

Response from Opinion Health with emailing of amazon vouchers ....

Its uncommon for it to take so much time but due to the length of the study, its taking a while to validate the responses provided. We had some completes through other sources as well and found records that had to be declared as bogus.
 
Could I request you to manage the members by informing them about the data validation process and that once it is done, they will be paid their incentives?

Alternately, you can ask them to write to info@opinionhealth.com and we will be happy to manage to expectations and inform them on updates.

Thank you for you patience with this
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Scott Butler
Member
Posts: 2
Re: Hepatitis C research: 30.00 incentive, Get involved today
Reply #9 on: February 14 2015, 01:45 pm

The 1 -2 weeks we were promised for these vouchers is now over 4.
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