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Hi All,

My colleagues and i just published a paper in PLoS Medicine titled "Dissemination of Research Findings to Research Participants Living with HIV in Rural Uganda: Challenges and Rewards" (open access, accessible at http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001397)

I am interested in learning how members of the community feel about our approach and how others disseminate research findings to their participants. I think most would agree this is important to do, but often challenging due to resource constraints, logistics, stigma, etc.

Regards,
Jessica

 
Larry Chang
Replied at 9:41 AM, 18 Mar 2013

Hi Jessica, I love this article and what you all did. I think it is a fantastic idea and the general concept could be applied to many settings. With increasingly tight budgets, I agree it is challenging to find the time and resources to implement, though it is a good ideal to strive for. Congrats, Larry

K. Rivet Amico, PhD
Replied at 10:58 AM, 18 Mar 2013

Excellent! I found the careful attention to cultural context and blending of research and local culture in a systematic way really insightful. The steps are a useful map for many different projects. Thanks for sharing this!
Rivet

Malcolm Brewster
Replied at 12:23 PM, 18 Mar 2013

Jessica, I think your work emphasises that health research is done with people, not to people. By developing the partnership between 'researchers' and 'subjects' additional knowledge has been generated which might otherwise have remained undiscovered. It has provided an opportunity to enhance the value of this knowledge to all those involved in its creation, rather than simply creating knowledge of value to those in the future. Clearly there has been a cost involved and there were ethical issues to consider. This work has shown that these can be addressed and, hopefully, future research programmes will deal with them at an early stage. Excellent.

Maxo Luma
Replied at 5:10 PM, 18 Mar 2013

I think this needs to be encouraged, it makes a lot of sense to share research findings with your participants. I think they need such evidence to foster behavior change and other things.
Let me give you just one example. I live in Vancouver and I have done some work on HiV with Centre for Excellence in HIV AIDS. I have noticed that when sharing Research findings with participants , it benefits them in several ways:
1- They use such evidence to advocate for themselves as to what need to be done that can contribute to empower them to fight the disease. As such, such evidence can be used to convince policy makers to change their attitude in the way they sometimes see things.
2- Also, if done in a efficient way ( knowledge translation ), it reinforces participants' understanding more the condition they are dealing and therefore they become more aware and have more control over it. I would encourage more people to replicate your approach , given all the benefits that seem to be associated with it.
Warmest regards ,
Maxo

YAP BOUM II
Replied at 12:05 AM, 20 Mar 2013

Dear Jessica



Thank you for the great contribution through the paper you've just publish.
One major question we are asking ourselves these last years is How the
community REALLY benefit from our research. This initiative of your group is
quite interesting and put the patient where He should be: at the center of
our research.



There is a long way to go but researchers should commit themselves to the
ethical committee to disseminate their results not only in publications
(peer review journal) that are not accessible to 95% of the study
participants but also to the people who have voluntarily and significantly
contributed to the findings.

Believe Dhliwayo
Replied at 12:36 AM, 20 Mar 2013

Totally agree with Yap and that such findings should be easily understood too the language should be less technical
Sincerely,
Believe
Believe Dhliwayo
SRHR Adviser
COWLHA Malawi

Moses Bateganya
Replied at 7:53 AM, 20 Mar 2013

Thank you all. This is the right thing to do and it's encouraged in human subjects training.
Should journals also include an english language summary just like the Cochrane reviews do? that way at least that section can be published in a local paper or translated at the researchers cost for local publications. Hope the forum will also talk about authorship for research that is done in health facilities but where no site staff get offered the opportunity to contribute. Would also love to see more support for local journals such as the Malawi Medical Journal, East African Medical Journal and a few others through which local staff at health institutions can be encouraged to write cases and publish best practices.
Moses

YAP BOUM II
Replied at 10:27 AM, 20 Mar 2013

Dear Moses



Thank you for your contribution.. I especially appreciate the need to built
research and scientific writing capacities for African health workers and
scientists. If not they won't be able to define their own research agenda
and report their findings in their own way.

Zach Landis Lewis
Replied at 3:48 PM, 20 Mar 2013

African healthcare providers who are research participants are largely in
the same boat as the research participants described in this study.

When my colleagues and I shared our preliminary findings with ART providers
in Malawi who we interviewed, we experienced similar reactions of surprise
and goodwill that Dr. Haberer and co-authors discuss.

Disseminating research findings directly to participants is an act of
respect that builds personal relationships, and that benefits all
stakeholders.

The large-scale event that the paper describes can be adapted to much
smaller-scale studies to yield the same benefit to all, whether through
smaller meetings or simply through dissemination of plain-language
materials as others have mentioned here.

A/Prof. Terry HANNAN
Replied at 6:09 PM, 27 Mar 2013

I would like to add my positive and supportive comments to this publication and the work it describes. End-user(patient) involvement is critical for healthcare delivery success. This concept was beautifully described by Lawrence Weed in the 1990s. He wrote, "We must think of the whole information system, and not just infinitely elaborate on the parts that interests us or fit into a given specialty. Patients do not specialize, and they or their families are in charge of all the relevant variables 24 hours a day, every day. They must be given the right tools to work with. They are the most neglected source of better quality and savings in the whole health care system. After all:
1. They are highly motivated, and if they are not, nothing works in the long run anyway.
2. They do not charge. They even pay to help.
3. There is one for every member of the population.”

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