#IrishMed Chat – Patients and Caregivers Involvement in Research

The Research Loop made made its first tweetchat debut on #IrishMed last Wednesday, July 12, 2017.  Dr. Liam Farrell from Ireland founded and moderates this tweetchat every Wednesday at 10pm BST and 5pm EST, bringing together an international group of patients, caregivers, providers, researchers, and many more to discuss a range of healthcare topics.  For this tweetchat, Liam was kind enough to have me as the co-host to talk about patient and caregiver involvement in research.

Tweetchat Basics

If you’ve never done a tweetchat – here are the basics.  They occur at a certain time (usually for 1 hour once a week).  They follow a predetermined hashtag (here it was #IrishMed).  And anyone is invited.  People on twitter just click on the hashtag and they can follow along with the discussion.  The moderator usually starts by greeting everyone and inviting them introduce themselves.  And after that, the real fun begins as the moderator poses questions (usually labeled T1, T2, T3, and so on for Topic 1, Topic 2, etc).  People respond with their thoughts on that topic (it helps if they start off with T1 or A1 (A for answer) so everyone can follow what they are responding to) and add the hashtag to keep the chat going.  The time flies by and great connections are made along the way through interesting discussions.

#IrishMed Topics

Liam and I discussed what topics would elicit conversation beforehand and decided on the following:

T1. Do patients and caregivers read research and what do you do with the information?

T2. How can patients/caregivers get involved in research beyond just being study participants?

T3. What do you think holds patients/caregivers back from contributing to research?

T4. What programmes are available to expedite patient/caregiver involvement in research?

T5. Action points; How do we get more patients/caregivers engaged in research? What tools can we provide?

I thought these would be great questions to give an overview of the current state of patients and caregivers involvement in research including barriers to involvement and ideas to encourage involvement.  For The Research Loop, it was a bit of a fact-finding mission to understand how better to empower patients and caregivers.

Liam posted these topics and some external links from The Research Loop resources on the IrishMed blog a few days before the tweetchat.

Pre-Show Video

Before the tweetchat, Liam, myself, and Annette McKinnon another patient involved in research in Canada recorded a short video giving some background on the subject.  We discussed why Annette and I are interested in this area, patients having an impact on the types of research being done, where people can find research, the hazards and benefits of “expert” patients, and what we were looking forward to in the chat.

#IrishMed Chat – Patients and Caregiver Involvement in Research

The chat was a hit.  Individuals from 4 continents and multiple countries engaged including South Africa, Britain, Ireland, Canada, America, and Australia.  There were 117 participants reaching 7.249 million impressions (statistics can be found here via Symplur).

A lot of great insights were brought forth.  You can read them by following the storify here.

You can also check out a full transcript via Liam’s storify here.

Thoughts after the chat:

#IrishMed is one of the most impressive tweetchats out there.  I’m always taken away by the level of engagement and diversity that comes forth and this chat was no different.   Just take a look at the graphic below to visualize the interactions that took place.

Marc Smith, NodeXL Social Media Network https://nodexlgraphgallery.org/

It seemed the tweetchat validated The Research Loop’s aims and confirmed many of the barriers The Research Loop is trying to overcome.  Patients and Caregivers want to have a voice in research.  They can and do engage in research.  And they should be able to be even more involved at all stages and in all areas of research.  It seems that for many on the chat, they started looking into research because of their own health issues or diagnoses. From there, they want to share and disseminate research.

However, there are often significant barriers to getting patients and caregivers involved.  Among them, health literacy or not understanding research-specific language, inability to access articles behind paywalls, and lack of institutional support from researchers or funders of research.  Patients and caregivers may need education and training and they also need to be valued, seen as partners, and feel empowered to contribute.  Patients and caregivers need more opportunities to be invited to the table and to even know where to start getting involved.   And even with opportunities, the practical issues that patients and caregivers face of time, money, well-being can all be a factor in whether they decide to contribute.

It seemed clear by the end that more educational materials are needed both for researchers to understand patient involvement and for patients and caregivers to understand the research process.  It also seemed clear that patients and caregivers want to be more involved and want to find new ways to get involved with research.

Going Forward

Going forward, this information will help develop more resources on The Research Loop to continue our mission of empowerment in part through education.  Resources on where to find research articles, the research process, how to read a research paper,  how feedback from patients and caregivers can impact research, and other ways to get involved in research (beyond The Research Loop) were already live on The Research Loop site.  And with the tweetchat in mind, there is a greater dedication to producing more resources – including a new infographic today to help patients and caregivers learn how to evaluate a research paper.  By giving patients and caregivers these tools to help them engage in research confidently and effectively, The Research Loop will continue to elevate their voices.  And as more patients and caregivers get involved in research, including reading more research, the more likely it is they will want to engage as I did with the researchers and submit feedback via the site.

Patient and caregiver engagement in all aspects of healthcare continues to grow.  The knowledge individuals who have personal experience, and thus expertise, of healthcare and healthcare systems is invaluable.  And if we can utilize that knowledge by inviting patients and caregivers to the table in research, the results will be extraordinary.  That’s what The Research Loop aims to do – transform the research process with the patient and caregiver voice.

 

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