Slide presentation from the January 28, 2013 informational webinar providing an overview of the PCORI Patient-Researcher Matching Challenge.

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
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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