Using Twitter & a Collaborative Research Platform in Rural Areas
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This presentation was held during the Social Media in Rural Areas workshop, organised by the Vasco da Gama Movement and EURIPA in the WONCA World Congress 2013 in Prague. The presentation is an introduction to Twitter and to an online collaborative platform for research projects.
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Using Twitter & a Collaborative Research Platform in Rural Areas
- 1. USING SOCIAL MEDIA IN RURAL AREAS HARRIS LYGIDAKIS @lygidakis it.linkedin.com/in/lygidakis
- 2. Our actions, or endeavors, are centrifugal in nature. Our efforts extend from the center, which is us, and are meant for a global audience thirsty for healthcare knowledge, to learn from our experience, and to have a better understanding of their healthcare related issue. CENTRIFUGALVS. CENTRIPETAL HOWARD J. LUKS “
- 3. Social Media Highway Code
- 4. Social Media Highway Code
- 5. Social Media Highway Code
- 6. Social Media Highway Code
- 7. Mayo Clinic: A 12-Word Social Media Policy Don’t Lie, Don’t Pry Don’t Cheat, Can’t Delete Don’t Steal, Don’t Reveal
- 9. How is it possible that such a short medium can have an impact on medical, scientific, research and academic circles and what can be said in 140 characters that may interest them?
- 10. Thousands of HCPs, academics and researchers of any level and experience useTwitter each day!
- 11. Twitter A micro-blogging service that enables users to send small public messages (tweets). It’s largely an open platform. Tweets are limited to 140 characters and they can include photos, videos and links. To start usingTwitter, you need only 10 minutes!
- 14. TheTwitter app
- 15. The magic share button
- 17. Share anything!
- 18. The magic share button
- 20. Share anything!
- 21. Find your Audience & Interact Follow users Retweet & Comment Reply openly to others Mention them Send a private Direct Message
- 22. Good Practices 2.0 = Content + Engagement Be precise, concise and persistent. Choose one topic and follow that path.
- 23. Noise vs. Signal: Hashtags They help categorize the tweets. It’s like following a thematic channel with tweets. If you search for a hashtag (for instance, #diabetes, #obesity, #primarycare), the result is a list of all the tweets that include this hashtag, even those from users you don’t follow.
- 27. Does that look complicated or cluttered to you?
- 31. Analytics
- 34. Hashtags Let’s take them a step further
- 35. Hashtags: Communities #phdchat #traumaresearch #BCSM / #BCCEU #rheum #eldercarechat #hcsm / #hcsmanz / #hcsmeu / #hcsmca #ruralmh #Mdchat #CHC
- 39. Impact Factor: A New Generation Twimpact factor (TWIF): Number of mentionings in tweets (tweetations) within first 7 days after article publication. Twindex7: Rank percentile of this article when its twimpact factor is compared to 19 previously published articles. Eysenbach G: “Highly tweeted articles were 11 times more likely to be highly cited.”
- 44. An online platform for collaborative research projects
- 45. coordination & engagement healthcare babel data inconsistency different sources, rural & isolated IMAGINETHE CHALLENGE: COLLABORATIVE RESEARCH
- 46. HOW MIGHT WE …? HMW make research multi-ethnic? HMW enable coordination & engagement? HMW involve patients?
- 47. We are developing an online platform, specific for biomedical research studies, which enables a holistic approach for the development and coordination of projects, and the collaboration among the stakeholders.
- 49. THEN SET UP STUDIES
- 50. MANAGE SUBJECTS & CASES
- 51. WORK OFFLINE
- 52. But how can patients be involved?
- 53. The Opportunity: Work with Patient Associations
- 57. REPORT SCHEMAS
- 60. By providing tools to patient associations in their bottom-up approach of carrying out research projects, their advocacy role will be enhanced and their members will be empowered to participate more actively.
- 61. Research quality can be improved when patients partner with researchers and policy makers in setting up projects with common objectives.
- 62. Patients are (re)positioned at the center of healthcare and their involvement in decision-making becomes the cornerstone of the new era of medicine and research.
Notas del editor
- 1) Twitter is certainly one of the easiest social media platforms out there, on which you can find and connect with individuals who share your interests.2)One that encourages connecting with people who we otherwise may never have known. And that holds true when you consider Twitter for healthcare.
- (1) This way you create a personalized feed that matches your professional, research and clinical interests.
- You have to provide content, be engaged, be precise, concise & persistent…
- Now let’s see whathashtags are…(1) By using them, you can label tweets so that other users can see tweets on the same topic.
- Let’s take a closer look; you see that each one of these tweets has the #primarycarehashtag
- Let’s take a closer look; you see that each one of these tweets has the #primarycarehashtag
- So why are they useful?Remember: the community is filtering for you! If you follow a hashtag, for instance #primarycare, you will find the most important related updates everyday.
- Does that look complicated or cluttered to you?There are other ways to visualize content!For instance there’s Flipboard for iPad/iPhone and Storify for all platformsThey are a great way to visualize things in a Newspaper-like or Storyboard-like way
- CHC Communities Health Centres
- CHC Communities Health Centres
- Automatic transcripts of tweet chats can be provided for future reference and use for educational purposes
- Another fantastic way of using Twitter is the Journal Clubs;You can pre-share a paper which will be discussed during the session and on a pre-determined time & date participants join Twitter and comment on it in a moderated tweet-chat.
- They are used by JMIR; Of course their use is quite limited & entails many biasesIndeed this is not exactly how SoMe will be implemented & used in the future, but it’s a good indication of the things to come
- (cover)
- For many years I have been involved in small clinical studies as a GP. From that experience I have come to notice some problems:Imagine the Challenge of Collaborative Research:Imagine how difficult it is for clinicians and researchers to collect data from different sources, from rural and isolated areas, developing countries, contexts with limited financial and technical resources.Consider the challenge of coordinating researchers, increasing their response rates and the collection of follow-up data.Think how demanding it is to deal with different healthcare systems, organizational models and a variety of individual, community and administrative issues, while trying to offer the best for the patients.The current methods are problematic: paper questionnaires, data inconsistency; the lack of Electronic Medical Records, the user-unfriendly and unstandardized programs
- (Research is not only about white, healthy males from urban cities)How might we make research multi-ethnic and to take account of the whole world regardless of the area of origin and disease.How might we help the coordination and engagement of researchers, located in different geographical regions including the developing countries?(Patients are increasingly interested in sharing their experiences and learning about their conditions, their prevention and treatments)How might we enable patients to carry out their own surveys while raising awareness on health issues and conditions.
- We are developing an online platform, specific for biomedical research studies,which enables a holistic approach for the development and coordination of projects,and the collaborationamong the stakeholders.
- There are tools that aid the creation of questionnaires with customizable fields and variables and their organization in libraries;in this example we’re setting up a questionnaire for smokers who suffer from depression and we are adding the Fagerstrom test.
- Then you can design different types of studies (for instance, with multiple cohorts, cross-sectional and longitudinal studies)/////******In this example we can see a Randomized Control Trial for the Cognitive Behavior Therapy in smokers: there are two groups (one control and one for the intervention) and two rounds of evaluation
- It also helps with the management of subjects participating in more than one studies.
- Furthermore, offline functionality is provided, which may be of help to clinicians carrying out house calls or to those working in rural areas with intermittent Internet connection./////**** The synchronization of all the data with those stored on the cloud occurs when the Internet connection is available.
- 1. Patients are increasingly interested in sharing their experiences and learning about their conditions.2.The Internet-savvy users, the so called e-patients, seek online health information, connect and collaborate with the others and take advantage of this medium not only for decision making and management of their own condition, but also for education and advocacy purposes.In fact, the advances in connectivity and the wide availability of data are shifting healthcare towards real patient-centeredness, and even in more rigorously scientific areas, such as research, the Patient and Public Involvement (PPI) is bound to cause a wave of transformations.
- 1. We were approached by the Federation of Diabetics of the Emilia Romagna.They were interested in exploring whether they could employ Lumos! for one of their projects.2. Their objective was to distribute a questionnaire in cooperation with the Regional Administration and the RHS, investigating the behavior, necessities, expectations and relationship with the RHS of the diabetics that receive insulin treatment and use blood glucose self-monitoring devices.A questionnaire had already been developed and approved by Regional authorities.
- The platform could easily be extended and tailored for special purposes, such as its employment as software for the needs of research studies that are carried out anonymously by email.It was transformed into an open public survey tool with support of characteristics from studies (multiple follow-ups and cohorts).
- Our opportunity: To work with patients associationsFollowing discussions with the organizers of the project, specific features have been added, such as control of the number of submitted questionnairesautomatic creation of QR codesability to overview the process with the help of simple reportsLaunched in February 2013; expected to be completed in June 2013.
- In support of the public and media campaign that aimed to raise awareness of the study,a URL and a QR code linking to the questionnaire have been produced and published on Social Networks and websites encouraging people to participate in the study.
- This is the tailored installation of the platform
- And here’s the electronic version of the structured questionnaire that was built
- During the project the coordinators are able to create reports, run functions, produce 2x2 tables, and eventually export the database for further statistical analysis, and transfer the data of the existing cohort for future follow-up projects.
- Though tt is focused on healthcare and its specific needs. This experience has been proven valuable for us: we realised what an import part the patient involvement can make in the research processc) patient associations will be supported in their healthcare-related and awareness-raising campaigns and their members will be encouraged in participating in healthcare more actively.d) The cloud and the power of intervention is bound to change this sector as well.
- As with medicine, (1) medical research needs a revolution, or to use the famous Eric Topol’s quote, it needs to be creatively destroyed.And if medicine is quite stiff to undergo a change, medical research seems to be even more unconquerable.(2) How can we optimize participation?(3) What about employing a crowdsourcing model for the healthcare professionals doing research?(4) What about inviting researchers and physicians to select the area of their interest on which they would like to make a contribution?This way researchers working in small rural villages may have the opportunity to contribute as much as physicians from large urban centers.
- By providing tools to patient associations in their bottom-up approach of carrying out research projects, their advocacy role will be enhanced and their members will be empowered to participate more actively.HCPs are bound to shift their culture and become partners with patients
- Research quality can be improved when patients partner with researchers and policy makers in setting up projects with common objectives.The results of this project are expected to lead to an evaluation of the ways of achieving higher engagement from the participants.
- Patients are finally (re)positioned at the center of healthcare and their involvement in decision-making becomes the cornerstone of the new era of medicine and research.