1. Act Together and Connect for Patient-Centered Outcome Research
- A concept paper submitted to PCORI by Chistopher Yang at Drexel University *
Specific Aims
Daily, patients are facing complex health care decisions. They are given many different treatment
paths and often do not understand or know which one is the best path to walk down. These patients
often turn to the internet to explore which option is the best for them. In their exploration of different
treatment options, they often notice gaps in research. Even though patients are concerned and
interested in research, they often do not have a way to connect to researchers.
We propose an online platform called Act Together and Connect for Patient-Centered Outcome
Research or ACTONNECT. ACTONNECT was created so that its foundation would be grounded on the
theory of action-based matchmaking and engagement. Meaning, if there are established actions from
both partners, the matchmaking process is more likely to be successful. The established partnership
will continue to prosper due to its sustainable grounded foundation.
ACTONNECT is more than just an idea. It is a strong team of five institutes that work in clinical care
and research. This team has been assembled to demonstrate the feasibility of ACTONNECT. Three
specific aims have been established to turn ACTONNECT into a reality.
Aim 1: Assemble a Stakeholder Advisory Council for the development of ACTONNECT
The council will contain five members inclusive of patients, caregivers, and researchers. Both rural and
metropolitan perspectives will be represented. This advisory council will be recruited and supported by
Mindy Gribble, RN who has extensive experience in working with patient advisory councils. Monthly
meetings will be scheduled between the Stakeholder Advisory Council and researchers.
Aim 2: Fully develop and test ACTONNECT
In collaboration with the Stakeholder Advisory Council, the development team will fully develop and test
ACTONNECT. It will have the following five components:
1. MipiDAT: The Marshfield Index of Patient Interests in Drugs and Treatments (MipiDAT) is a
metasearch engine for the voice of patients
2. Natural Language Processing (NLP): negative statement analysis and sentiment analysis can
be conducted using NLP.
3. Ontology Annotation: ontologies will be used to solve the problem that patients and researchers
often use different vocabularies to describe the same thing.
4. Visualization: An ACTONNECTION is an info graph that summarizes MipiDAT search results. It
can be used to visualize the related concepts. The ACTONNECTION will reveal the current
gaps and knowledge of the searcher; this information will also allow patients to make informed
decisions.
5. ACTONNECT: a website to match patients, care givers, researchers, physicians, and other
stakeholders based on their search activities using MipiDAT.
Aim 3: Evaluate the impact of ACTONNECT
With inputs from the Stakeholder Advisory Council, key metrics of success will be developed. Those
metrics will be automatically calculated and tracked to demonstrate the impact of ACTONNECT.
*
A team consisting of Drs. Chistopher Yang2, Eneida Mendonça3, Umberto Tachinardi3, Andrew Su4, Chunlei Wu4, Tian Xia5,
and Simon Lin1 will be assembled for ACTONNECT. 1Marshfield Clinic Research Foundation, 2Drexel University, 3University of
Wisconsin‐Madison, 4Scripps Research Institute, 5Huazhong University of Science & Technology.
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2. Team and Environment
The team, resources, infrastructure and environment are well-suited for developing the program
ACTONNECT.
Team: Under the leadership of Dr. Simon Lin, Director of the Biomedical Informatics Research Center
at Marshfield Clinic Research Foundation, a team of experts from five patient care and research
institutes will be assembled to implement ACTONNECT. The team has demonstrated its productivity
with previous collaborations and current prototyping activities (Table 1). The Marshfield team was
recognized by the ONC in 2013 for their innovations in creating the patient-centered mobile application
of “Heart Health Mobile”.
Patient-Centered Development: A patient-centered approach will be used to actively engage patients in
every step from the design, development, and testing to the evaluation of ACTONNECT. The
development team has access to both rural and metropolitan areas. In the rural communities,
Marshfield Clinic Research Foundation can access advisors though the Community-Academic
Partnerships Core (CAP). While in metropolitan areas, the team is able to access through the UW-
Madison Institute for Clinical and Translational Research.
Technical Development Resources: With more than 40 full time employees, the Biomedical Informatics
Research Center (BIRC) at the Marshfield Clinic Research Foundation (MCRF) is home to one of the
largest clinical informatics research centers in the United States. Eye-tracking equipment is available at
Marshfield Clinic. This technology has been used to improve the usability of designs by tracking the eye
movement of subjects when looking at a particular device. MCRF is also part of the consortium for the
Institute for Clinical and
Translational Research
(ICTR) at University of
Wisconsin Madison that
offers significant
resources to translate
innovations into clinical
practice. Each
collaborator is adequately
supported by outstanding
computational and
scientific infrastructure at
their home institutes.
What is
ACTONNECT
ACTONNECT provides
an innovative way to
connect patients and
researchers when they
are looking for answers to
their own questions.
ACTONNECT is a Figure 1. ACTONNECT connects patients and researchers by engaging them in
common “playground” for searching MipiDAT. The search results can be summarized into an ACTONNECTION –
both patients and an infograph to intuitively depict the concepts and knowledge gaps. Each author of
researchers. an ACTONNECTION is recognized. Throughout the process of creating of
ACTONNECT users will ACTONNECTIONs, patients and researchers are able to know each other and form
research partnerships. ❶Engaging in search activities ❷Results summarized into
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ACTIONNECT ❸❹ ❻❼Four different ways to find new connections ❺ Identify
research and knowledge gaps.

3. 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.
Patients will be able to search MipiDAT and find out the experience of other patients on different 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 (Figure 1). We use the info graph as an intuitive way to present the results.
ACTONNECTIONs also serve as an important function for patients and researchers to communicate.
With an ACTONNECTION, the concerns and knowledge gaps that are needed to help patients make
decisions can be visualized and identified.
Throughout the process of creating each ACTONNECTION, patients and researchers are able to know
each other and form research partnerships by four different ways (❸❹ ❻❼ in Figure 1). The initial
introduction of the users of ACTONNECT is handled by LinkedIn or MedHelp. By this matching method,
not only is the complexity of developing a matchmaking system is reduced, but it also preserves the
human touch, for example John and Lori might have a common friend from LinkedIn.
ACTONNECT is based on the grounded theory of action-based matchmaking
ACTONNECT 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: from the initial willingness, to the actions, to the 1 +1 >2 partnerships (Figure
2). ACTONNECT allows the matchmaking at the highest level by allowing patients and researchers to
share a common ground. This common ground is found through their investigation and creation an
ACTONNECTION info graph. With the action–based matchmaking, the partnership between patients
and researchers can be more sustainable.
Engaged by Willingness Engaged by Actions Engaged by Partnership
•Shared vision •Shared activities •Shared investigation
•Find each other at conferences or •Utilize the platform to derive •Partnership in actions
online research questions •1 + 1 > 2
•Join the same campaign •Stronger commitment
Figure 2. Three levels of engagements in the matchmaking process. The key is to engage the partners in the
matchmaking process into shared activities.
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4. Innovations in ACTONNECT
MipiDAT: To our knowledge, MipiDAT is the first metasearch engine used for searching the voice of
patients. As of now, Google and other search engines cannot effectively search active discussions by
patients which are found in different forums located in various health social media websites. Nor can
Google or other search engines visually present the results using an info graph. One of the co-PIs of
ACTONNECT, Dr. Christopher Yang, at Drexel University, has demonstrated the feasibility of creating
MipiDAT. This was done by the same web crawling approach used by Google and other search
engines. The web crawler can be reconfigured to reach multiple forums from different sources. As such,
other kinds of social media such as Twitter or Facebook can be added. With MipiDAT, the voice of
patients can be visualized and heard by anyone who searches at ACTONNECT.
Figure 3. Under the hood of ACTONNECTION
Natural Language Processing (NLP) and Ontology Annotation: Patient postings often contain
misspelling or the use of alternative names for drugs. With NLP and ontology annotation, ACTONNECT
is able to map these differences, for instance, “venlafaxine”, “efexor” and “effexor” all into the
“venlafaxine” category. More interestingly, the ontology technology knows both Effexor and Zoloft are
antidepressants. This advanced technology is used in the search engine making it more effective and
intellectually advanced (Figure 3). To demonstrate the feasibility of these innovations, the co-PI’s of
ACTONNECT, Dr. Eneida Mendonça and Dr. Umberto Tachinardi, at University of Wisconsin Madison,
have conducted sentiment analysis of patient postings in MipiDAT. Moreover, Dr. Andrew Su and Dr.
Chunlei Wu, who are the co-PIs of ACTONNECT at Scripps Research Institute, established the pipeline
of using the NCBO annotator to annotate MipiDAT postings using all 339 ontologies maintained by
NCBO.
ACTONNECTION: An ACTONNECTION is an innovative info graph to depict different concepts in the
search result and their relationships to each other. This graph can be used to facilitate critical thinking.
When combined with a short written text, an ACTONNECTION will be a powerful way to summarize the
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5. existing knowledge gaps. Dr. Tian Xia, co-PI at Huazhong University of Science & Technology, has
demonstrated the feasibility of ACTONNECTION using Cytoscape. Cytoscape is a Web 2.0 component
to visualize networks (Mei, Xia et al. 2012).
Reliance on LinkedIn and other Infrastructure: We do not want to reinvent the wheel of social
networking to make the connections. This is due to the inconvenience of having to create an account,
locating others that you may know and establishing that account. ACTONNECT is built upon LinkedIn
and MedHelp. Users of ACTONNECT can use their existing, established LinkedIn or MedHelp accounts
to publish their ACTONNECTIONs.
Why MipiDAT is a magnet for both patients and researchers
With MipiDAT, patients and care givers are able to search dozens of patient forum websites and find
out the experience of other patients. Moreover, patients are able to cross reference the professional
literature in PubMed (❺ in Figure 1). As such, some patients might be able to identify gaps in current
evidence that is needed for them to make informed decisions. Patients will be able to publish their
findings in an ACTONNECTION info graph and share it with others. The intellectual contribution of
patients is fully acknowledged at ACTONNECT. One critical mission of ACTONNECT is to promote the
sense of ownership by different stakeholders in the research process. With ACTONNECTIONs, the
origin of the idea becomes more transparent and traceable.
Researchers, on the other hand, are constantly seeking funding for patient-centered outcomes
research. To support the PCORI mission of working on “what matters most to patients”, researchers
need to quantify what patients want and need. MipiDAT offers a one-stop search engine for
researchers to quantify the voice of patients. For instance, a researcher who is planning on a study of
the comparative effectiveness of Zoloft vs. Effexor can search MipiDAT to find out to what degree
patients are concerned about the side effects of constipation or orgasms.
See more in the following YouTube video. http://youtu.be/1ZSdK6rfwKc
How to turn ACTONNECT into reality?
The idea of ACTONNECT is highly innovative. To manage the technical complexity of the
implementation, the PI of this project, Dr. Simon Lin, has identified co-PIs at four other institutes to form
a multidisciplinary development team. The team has demonstrated productivity either through previous
collaborations or though the prototyping of key ACTONNECT components (†).
Table 1. The idea of ACTONNECT is solidly supported by the prototype of its key components and a strong team
of collaboration between patients, clinical providers, and research institutes.
Components Prototyped To be developed Team Leader Established
Collaborations
The Marshfield Index The feasibility of Create a distributed Dr. Christopher Dr. Yang invited Dr. Lin
of Patient Interests in creating MipiDAT by web crawling approach Yang from Drexel to be on the health
Drugs and Treatments web crawling was to index the patient University and social media and
(MipiDAT): MipiDAT is established; An voices over the Dr. Simon Lin patient‐centered
a database of patient example data set of Internet. MipiDAT will from Marshfield research panel in the
voices. It indexes consumer postings become the PubMed Clinic Research IEEE 2013 conference on
patient opinions from in MipiDAT was equivalent of Patient Foundation Healthcare Informatics.
various social media, created (Marshfield‐ voices. Different
such as MedHelp and 300) to drive the adaptors will be
†
The participation of each institute to develop ACTONNECT further is subject to the terms and conditions of future funding
announcements.
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6. WebMD. prototyping of other developed for MipiDAT
components. to index different social
media sites.
Natural Language The Apache cTAKES Fully develop Natural Dr. Eneida A. Drs. Mendonça,
Processing (NLP): NLP was utilized to Language Processing Mendonça and Tachinardi and Lin are all
is critical to analyze analyze Marshfield‐ (NLP) approaches Dr. Umberto key leaders at the
patient voices in 300 data set. toward all data in Tachinardi from Biomedical Informatics
MipiDAT. MipiDAT; Include University of Core of the University of
critical NLP techniques Wisconsin ‐ Wisconsin Institute for
such as negation Madison Clinical and Translational
analysis and sentiment Research. They have
analysis. established
collaborations.
Ontology Annotation: The Marshfield‐300 Fully implement the Dr. Andrew Su Dr. Su and Dr. Lin
Each posting by data set has been annotation pipeline for and Dr. Chunlei worked together on the
patients in MipiDAT used to test the the full MipiDAT data Wu from Scripps annotation of genes in
will be automatically NCBO annotation set. Research social media and
mapped to pipeline. Institute published a paper in
standardized terms. BMC journals (Good,
Howe et al. 2011).
Visualization: An Cytoscape was used Build an interactive Dr. Tian Xia at Dr. Xia and Dr. Lin
ACTONNECTION is an to create the process to slice and Huazhong from published three papers
intuitive infograph to ACTONNECTION. dice the University of together on using
visualize and to ACTONNECTION using Science & Cytoscape to
communicate the ontologies, for Technology visualization complex
ideas between instance, showing biomedical data (Mei,
patients and gastrointestinal side Xia et al. 2012; Xu, Wang
researchers. effects only. et al. 2012; Peng, Xu et
al. 2013).
ACTONNECT: An Wireframes of the Fully implement and Dr. Simon Lin Biweekly conference
online website to ACTONNECT program the website to from Marshfield calls and shared online
connect patients and website were connect all the four Clinic Research workspace for file
researchers based on established. components above; Foundation and exchange have been
the grounded theory ACTONNECT builds fully engage Dr. Tian Xia from established between five
of “action‐to‐ upon general‐ stakeholder advisory Huazhong institutes to prepare the
connection” for long‐ purpose networking board throughout the University of prototypes for this
term collaborative tools such as design, implementation Science & proposal.
engagement. LinkedIn, MedHelp and test phases. Technology
and others.
Design and Project Management Considerations
Management of Complexity and Scalability: The complexity of this project is controlled by properly
scoping the core development and leveraging existing services. For instances, we utilize the
specialized social media companies in healthcare found on pages such as MedHelp or WebMD. These
companies are used to deal with false postings or junk postings. We utilize LinkedIn or MedHelp to
define user identities; otherwise, the user can post their ideas with the ability to stay anonymous. The
LinkedIn and MedHelp accounts are used to handle login/password, and to manage introductory
emails. Outsourcing the basic profile process allows the system to be highly scalable and the
development process more manageable.
Usability: The development team has access to the usability lab at Marshfield Clinic Research
Foundation. The usability lab has eye-tracking devices and focus group facilities. The usability lab
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7. technology is used to observe, record, and analyze how people interact with computer and Internet
resources. A clean and simple interface is a top priority of the ACTONNECT design.
Section 508 Accessibility: The ACTONNECT website will be built with the awareness of Section 508
requirements. As such, the website can be more accessible to people with disabilities. We will use
Functional Accessibility Evaluator tool developed by University of Illinois at Urbana-Champaign to test
the accessibility of the final design.
Engagement of rural population: The Marshfield Clinic is located in rural Wisconsin and serves a rural
population of more than 0.5 million. The Marshfield Clinic Research Foundation has experience of
engaging rural patients in healthcare. At least one member of the Stakeholder Advisory Council of
ACTONNECT will represent rural population. Patients in rural and remote areas can easily get access
to ACTONNECT through internet, the same as patients in metropolitan areas. ACTONNECT can also
be used as a tool for ambassadors to rural areas to engage patients in conversations of comparative
healthcare decisions.
Timeline: Timeline and deadline concerns will be managed by regular scheduled meetings among
collaborators on a monthly basis. Meetings will be used to track project progress, address impediments
to progress and evaluate whether identified benchmarks are on track. Problem solving and corrective
planning of actions will be devised for tasks which are brought to attention outside meeting timeline
expectations.
Figure 4. Timeline of 18‐month development of ACTONNECT
Literature Citations
Gasson, S. and J. Waters (2011). "Using a grounded theory approach to study online collaboration behaviors†."
European Journal of Information Systems 22(1): 95‐118.
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8. Good, B., D. Howe, et al. (2011). "Mining the Gene Wiki for functional genomic knowledge." BMC genomics
12(1): 603.
Mei, H., T. Xia, et al. (2012). "Opportunities in systems biology to discover mechanisms and repurpose drugs for
CNS diseases." Drug discovery today.
Peng, K., W. Xu, et al. (2013). "The disease and gene annotations (DGA): an annotation resource for human
disease." Nucleic acids research 41(D1): D553‐D560.
Sawhney, M., G. Verona, et al. (2005). "Collaborating to create: The Internet as a platform for customer
engagement in product innovation." Journal of interactive marketing 19(4): 4‐17.
Xu, W., H. Wang, et al. (2012). "A Framework for Annotating Human Genome in Disease Context." PloS one
7(12): e49686.
This Concept paper is submitted by Dr. Christopher Yang at Drexel University to the PCORI Patient-
Researcher Matching Challenge.
MARSHFIELD CLINIC RESEARCH FOUNDATION, A DIVISION OF MARSHFIELD
CLINIC (“MC”) IS EXPRESSLY CONDITIONED ON SPONSOR AND ADMINISTRATOR
LIMITING THE USE OF MC’S NAME, LIKENESS, IMAGE, AND BIOGRAPHICAL
INFORMATION FOR THE SOLE PURPOSE OF ADVERTISING AND PROMOTING THE
CHALLENGE. ANY OTHER USE OF MC’S NAME, LIKENESS, IMAGE, OR BIOGRAPHICAL
INFORMATION IS STRICTLY PROHIBITED WITHOUT THE EXPRESS WRITTEN CONSENT
OF MC. IF PCORI AWARDS MC WITH A PRIZE, THIS PROVISION SHALL SUPERSEDE ANY
CONFLICTING CONTEST TERM OR CONDITION.
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