Patient-Researcher Matching Challenge Informational Webinar
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Actonnect is a collaborative informatics platform led by Dr. Simon Lin at the Marshfield Clinic Research Foundation, designed to connect patients and researchers for patient-centered outcome research. Utilizing the Marshfield Index of Drugs and Treatments (mipidat), the platform allows users to explore patient experiences and produce informative graphs called actonnections based on social media discussions. The initiative incorporates advanced technologies for effective information retrieval and promotes sustainable partnerships between patients and researchers.
Patient-Researcher Matching Challenge Informational Webinar
- 1. The ACTONNECT Team The team is under the leadership of Dr. Simon Lin, Director of the Biomedical Informatics Research Center at Marshfield Clinic Research Foundation. With more than 40 full time employees, the Biomedical Informatics Research Center (BIRC) at the Marshfield Clinic Research Foundation is home to one of the largest clinical based informatics research centers in the United States. Dr. Lin has engaged the help of four other internationally recognized institutes in patient care and research: Dr. Christopher Yang from Drexel University, Dr. Eneida A. Mendonça and Dr. Umberto Tachinardi from University of Wisconsin – Madison, Dr. Andrew Su and Dr. Chunlei Wu from Scripps Research Institute, and Dr. Tian Xia from Huazhong University of Science & Technology. These professionals have been assembled to implement an informatics platform to act together and connect for patient‐centered outcome research. A platform we call ACTONNECT. Dr. Simon Lin Dr. Christopher Yang Dr. Eneida Mendonça Dr. Umberto Tachinardi Dr. Andrew Sue Dr. Chunlei Wu Dr. Tian Xia
- 2. Why it Works ACTONNECT is a common “playground” for both patients and researchers. ACTONNECT users will be able to view the searches of other patients, caregivers, physicians and researchers. To develop a foundation for the search, the team will sample the voice of patients from social media websites like the patient forums at MedHelp and WebMD, and then index them into a database as well as a metasearch engine called MipiDAT‐ the Marshfield Index of Drugs And Treatments. How can I make informed decisions on various medications and treatments? What is the experience of other patients? What is the patient's perspective? Where is the need of CER? What is the most common misinformation? Patients will be able to search MipiDAT and find out the experience of other patients on various drug and treatment options. Researchers can also search MipiDAT to verify the patient’s concerns. After searching MipiDAT, both patients and researchers are able to create an info graph called ACTONNECTION. The info graph is used as an intuitive way to present the result results. ACTONNECTIONs in themselves will show patients how many other people have searched for a particular disease or medication. For example, a researcher is interested in how many people have ADHD and are depressed. The information produced by the ACTONNECTION that was created shows, have been 3,206 people that posted on social media about Adderall, and 165 of those people also posted about Effexor. ACTONNECTION
- 3. ACTONNECT Matchmaking Engaged by Willingness • Shared vision • Find each other at conferences or online • Join the same campaign Engaged by Actions • Shared activities • Utilize the platform to derive research questions • Stronger commitment Engaged by Partnership • Shared investigation • Partnership in actions • 1 + 1 > 2 ACTACTONNECT is based on the grounded theory of action‐based matchmaking and engagement (Sawhney, Verona et al. 2005; Gasson and Waters 2011). There are three levels of engagements in the matchmaking process. 1. The initial willingness from both parties, one who is looking to be connected with the other to develop rigorous research studies. 2. The two groups are engaged by actions, physically sharing in the activities of creating research studies, protocol and publishing's. 3. The Engaged partnership, which is literally the 1 +1 >2 partnership. ACTONNECT allows the matchmaking at the highest level by allowing patients and researchers who share a common ground. This common ground is found through an investigation and the creation of an ACTONNECTION info graph. With the action–based matchmaking, the partnership between patients and researchers can be more sustainable. See more in the following YouTube video. http://youtu.be/1ZSdK6rfwKc
- 4. ACTONNECT’s Technical Advantages The Marshfield Index of Patient Interests in Drugs and Treatments, or MipiDAT, is a search engine used for searching the voice of patients. As of now, Google cannot effectively search active discussions by patients which are found in different forums like health webpages, Twitter, and Facebook. Nor can other search engines visually present the results using an info graph. Patient postings often contain misspelling or the use of alternative names for drugs. With Natural Language Processing and ontology annotation, ACTONNECT is able to map these differences. This advanced technology is used in the MipiDAT search engine making it more effective and intellectually advanced. Effexor is most effective for my depression and ADD. Zoloft is most effective for my obsessive thinking, but also makes me very tired. Can I take both at the same time? ( Currectly take Effexor XR 150mg.. Used to take Zoloft 100mg. daily.) If not, is there a different med that can be taken with the Effexor to help control the obsessing? Social Media postings indexed by MipiDAT
- 5. A Glance at the ACTONNECT Webpage Search Search MipiDAT Conditions My ACTONNECT Current Research Research Professionals You are logged in using LinkedIn Log out to Remain Anonymous Act Together and Connect for Patient-Centered Outcome Research ACTONNECT ACTONNECTION you published: July 7, 2013 Zoloft or Effexor? I found the side effects of Zoloft include weight gain, trouble having orgasms and constipation. What is the most recent evidence base of comparative effectiveness? 15 similar Actonnections by 12 people 8 comments from 6 people People viewed your ACTONNECTION Research related to your ACTONNECTION Top matches based on your published ACTONNECTIONS