All posts by julie.schulman@duke.edu

Influential Healthcare Publications Recognize PCORnet for Its Important Role in Driving Patient-Centered Research

As the National Patient-Centered Clinical Research Network (PCORnet), a PCORI initiative, continues to gain momentum as a model for patient-centered research, several notable publications are recognizing the Network’s innovation. Three recent publications are out that provide evidence of PCORnet’s increasing influence in the movement toward community-driven research.

The first is a discussion paper released by the National Academy of Medicine that considers the benefits of moving to a continuous learning healthcare system, which has been a goal of PCORnet since its inception. In such a system, both experience and research are simultaneously used to generate new knowledge and improve patient involvement and care processes. The paper argues that achieving a continuous learning healthcare system is possible by actively engaging front-line clinicians in the design and conduct of activities. This continuous learning atmosphere will create new knowledge, return data to clinicians and patients to guide care, reduce costs, and create value for those served. The paper was co-authored by several individuals affiliated with the PCORnet Coordinating Center, the ADAPTABLE Study, the INVESTED Study, the New York City Clinical Data Research Network (NYC-CDRN), and the Research Action for Health Network (REACHnet).

Understanding and communicating the key concepts of this learning system is a priority for PCORnet, and in order to help this movement, we are committed to engaging diverse stakeholders through various social media tools and platforms. Here, you can find a social media toolkit developed by the National Academy of Medicine that includes suggested messages and graphics designed to help you and your team to promote and communicate the importance of moving to a continuous learning healthcare system.

Along with the push for a continuous learning system, there is also an increasing need for new informed consent processes to drive efficiency in patient engagement. To that end, the New England Journal of Medicine (NEJM) recently released an article that highlights how PCORnet’s ADAPTABLE study is positively changing clinical research by engaging in electronic consent processes and web-based design to improve and expand the informed consent processes for both researchers and participants.  According to the NEJM article, most studies have shown that participants recall crucial facts about a study better with the use of these kinds of interactive features, proving that PCORnet and its ADAPTABLE study are transforming the culture of clinical research to put patients’ needs first.

Finally, PCORnet recently received yet another shout-out with a perspective piece for Circulation, a journal of the American Heart Association, compiled by Adrian Hernandez, ADAPTABLE Study Co-PI, and Henry Cruz, a patient Adaptor in the ADAPTABLE Study. In this article, the two authors discuss the need for and benefits of a national learning health system and how PCORnet is conducting research with enhanced quality, speed, and efficiency in “real-world settings” to achieve such a system. The piece also mentions the ADAPTABLE study’s collaboration with ADAPTORS, a group of patient representatives who are shifting the role of patients in the research process from participant to partner, and how this collaboration creates an effective organizational vision that can be useful in addressing one of the nation’s most pressing public health problems: cardiovascular disease.

While these three pieces are an exciting achievement, we anticipate that PCORnet’s momentum will only continue to build. Be on the lookout for more mentions of our innovative Network in the months to come!

 

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

PCORnet Blog

iConquerMS™ Members Revamp Recruiting Materials to Reflect Community Preferences

Author: Laura Kolaczkowski, Co-Principal Investigator of iConquer Multiple Sclerosis Patient-Powered Research Network (MS-PPRN).

Multiple Sclerosis (MS) Awareness Week (March 5-11th) is a weeklong national effort to increase awareness of MS, and provides an opportunity to examine how asking and listening to communities of patients can improve how we make connections between people living with chronic conditions and the research community. Finding the right way to make this connection is a key challenge for the partner networks within the National Patient-Centered Clinical Research Network (PCORnet), an innovative initiative of PCORI, which have a unique opportunity to engage people living with chronic conditions, such as those with MS, by connecting them to the research community. This guest blog examines one network’s experience of taking the guesswork out of the collateral development process by enlisting patients to help make their marketing materials more relevant to people with MS.


In response to requests from iConquerMS™ community members, the Multiple Sclerosis Patient Powered Research Network (MS PPRN) recently revamped promotional materials, images and message on our website. We were challenged by feedback to change our recruitment and engagement approach because the initial message that anchored our promotional materials regarding the importance of “Big Data” did not resonate with our target audience (people with MS). We also heard from many others that they could not identify or relate to the images nor the messaging on our website.  For example, our community members felt the stock images that we originally selected for promotional materials (see image below) have been spotted on many other websites and in printed materials on non-MS topics and, though they were a pleasant, smiling group of diverse people, our community members felt that they did not represent the multiple sclerosis population.

Patient community members in iConquerMS™ include talented people from diverse professional backgrounds.  We asked our engagement committee — which includes people living with MS who have publicity, advertising and marketing backgrounds — for ideas to reshape our message so that it would be meaningful and resonate with our community. Because we operate on a limited budget, they were also encouraged to develop those ideas into usable marketing materials. This special group picked up the challenge and so much more.

Be Part of the Cure” is the call to action our engagement committee identified as best suited to encourage people with MS to join iConquerMS™. This simple call to action replaces our previous lengthy explanations of the power of big data. This patient-led, ad hoc group then contacted members of iConquerMS and asked them to contribute photos. The stock images were replaced with images of people who are actual members of iConquerMS™.

For the main message, they crafted a simple display of information that resonates with all key stakeholders.  Instead of getting bogged down with lots of words that mean something to researchers but not necessarily patients, the message is concise as to who we are, what we are trying to do, and how the reader can help.

We often hear talk about the importance of learning from our mistakes, but when it comes time to sharing these missteps we tend to shy away from talking publicly about the error of our ways. When we were asked if we might write this blog for PCORnet about our own lessons learned, we agreed this is an excellent opportunity to perhaps save others from similar pitfalls.

Lesson learned? Consult your target audience early and often, and be willing to adjust according to their responses. We have much to learn from our patient partners and they can add value to every part of the process.

This critical step to include more MS patients into the marketing of iConquerMS™ should yield authenticity to our efforts and produce greater participation. Even when you know what you’re doing isn’t working, it can still be hard to change directions; resources and often egos are often attached to what has been previously done.  It took a giant leap of faith from the lead project team of iConquerMS and an open minded approach to turn this challenge into an opportunity to connect at a deeper level and trust the patient community to take the lead.

More about the iConquerMS™ network:
iConquerMS: Empowering Patients (Video)
Multiple Sclerosis Research Network Builds on Patient Input
When a Clinician Becomes a Patient

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

PCORnet Partner Network Inspires Alzheimer’s National Summit and Catalyzes New Digital Tools for Alzheimer’s Research

The National Alzheimer’s & Dementia Patient & Caregiver-Powered Research Network (AD-PCPRN) recently helped shape a National Alzheimer’s Summit in Washington, DC. AD-PCPRN is one of 20 Patient-Powered Research Networks of the National Patient Centered Clinical Research Network (PCORnet), an initiative funded by the Patient Centered Outcomes Research Institute (PCORI). AD-PCPRN is harnessing the collaboration of patients, caregivers, and researchers to create a powerful ripple effect of momentum in an effort to drive patient-centered Alzheimer’s research.

On September 27, AD-PCPRN participated in the National Alzheimer’s Summit, a three-day event organized to bring together the best Alzheimer’s and dementia researchers. Because of its importance within PCORnet, Summit leaders sought out the guidance of AD-PCPRN’s Advisory Councils, which include patients and caregivers as well as experts in the fields of communications, registries and clinical trials, to catalyze a range of initiatives that are accelerating the development of effective treatments for Alzheimer’s disease and related dementias. Each of these initiatives are priority concerns for a core partner and lead organization within AD-PCPRN: UsAgainstAlzheimer’s (UsA2), a non-profit organization pressing for greater urgency from government, industry, and the scientific community in the quest for an Alzheimer’s cure.

UsA2 hosted the National Alzheimer’s Summit in Washington, DC as well as Diversifying the Race for a Cure, a pre-Summit pilot convening on disparities in Alzheimer’s care. The AD-PCPRN Councils were key advisers at both events, and the Councils specifically helped establish each programs’ objectives and agendas. Infused with AD-PCPRN’s dedication to jumpstart and transform research, engage diverse stakeholders, and energize a bipartisan movement for medical progress, the robust agenda of presenters included patients, caregivers, researchers, industry scholars, elected officials, former First Ladies, community organizers, and advocates.

During the Summit, UsA2 released compelling reports analyzing the Alzheimer’s drug pipeline and crystalizing Alzheimer’s future impact on Latinos. In addition, UsA2 launched the first Alzheimer’s Party Convention, a platform for policymakers to advance progress for effective treatments and policy to improve the lives of those with Alzheimer’s and their caregivers. Most importantly, it created a platform for the voices of those with Alzheimer’s or other dementias and their caregivers.

Highlights of the Summit are available online. For more information about the work of AD-PCPRN, click here. If you would like information about the 2017 National Alzheimer’s Summit or Diversifying the Race to a Cure, please contact UsAgainstAlzheimer’s Chief Operating Officer Sally Sachar at ssachar@usagainstalzheimers.org.

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

PCORnet Announces 11 Collaborative Research Groups to Speed Insights to Patients

The National Patient Centered Clinical Research Network (PCORnet), a PCORI initiative, today announced the launch of 11 Collaborative Research Groups (CRGs) designed to catalyze new multi-network research. Each CRG team is composed of content experts from within the Network focused on generating engaging, high-priority research questions that will help patients and clinicians make informed healthcare decisions.

“Every week, if not daily, I have to look at a patient or caregiver and tell them that I hear them, and I understand their needs, but we simply do not have an answer,” said Tim Carey, PCORnet co-investigator, Mid-South Clinical Data Research Network, and member of the PCORnet Research Committee. “It is a stark reminder that we cannot be complacent—we must be impatient about uncovering insights that matter.”

In the below video, Tim explains more about how PCORnet’s CRGs are increasing the pace of research in an effort to quickly and efficiently incorporate clinical research findings into practice that will empower patients and their caregivers to make informed decisions.

One of the most compelling features of PCORnet’s CRGs is that they tap expertise from different disciplines, bringing a holistic perspective sorely needed in clinical research. The CRGs’ diverse perspectives will ensure PCORnet is examining the right questions in the right way to bring the answers that matter most to patients and caregivers.

PCORnet’s CRGs are doing just that: collaborating with advocates, partner networks, and funders early on to rapidly develop the most important questions and use PCORnet’s unique infrastructure. PCORnet’s CRGs are listed below; each is focused on bringing new insights to a specific therapeutic area or research method.

  • Autoimmune and Systemic Inflammatory Syndromes
  • Behavioral Health
  • Cancer
  • Cardiovascular Health
  • Diabetes and Obesity
  • Health Disparities
  • Health Systems, Health Policy and Public Health
  • Hospital Medicine
  • Kidney Health
  • Pediatrics
  • Pulmonary

Some of the CRGs may also contain Research Interest Groups (RIGs) that are dedicated to specific research areas. For example, the Cardiovascular Health CRG has specific RIGs for Women and Heart Disease, Hypertension and Congestive Heart Failure.

In addition to developing high-priority research questions, the CRGs are busy developing common data elements relevant to the CRG focus area for use in the Common Data Model.  Through these and other innovative efforts, the CRGs are working to advance the science of patient-centered outcomes and pragmatic research through innovative methods, and assisting the PCORnet Front Door with research requests.

“It is absolutely essential that we not only reduce the timing and cost of research, but also ensure we are conducting rigorous studies with results we can be confident about,” said Tim. “PCORnet’s CRGs are poised to drive progress on all of these fronts, and I am looking forward to seeing their power in action.”

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

PCORnet Welcomes New Member to Research Committee

On Friday, December 16, the PCORnet Council, the main governing body of PCORnet, approved the slates for the Engagement and Research Committees, welcoming one new committee member and re-electing five others.

Marleah Dean Kruzel, PHD, a steering committee member for the American BRCA Outcomes and Utilization of Testing Patient-Powered Research Network (ABOUT), has joined the Research Committee. Marleah is an Assistant Professor in Health Communication at the University of South Florida. A BRCA2-positive patient herself, her research lies at the intersection of health, interpersonal, and applied communication.

Tom Carton and Barbara Kroner will continue to serve on the Research Committee. Cherie Binns, Michael Horberg, and Neely Williams will continue to serve on the Engagement Committee.

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available atwww.pcori.org.

PCORnet-Designated Flu Dosing Study Pilots SMART IRB Approach

Flu season is upon us, and the The National Institute of Health (NIH)-funded INVESTED study is examining adults with heart disease who get infected with influenza, more commonly known as “the flu,” who are more likely to be at risk for heart attacks and hospitalization due to heart failure. Conducted through the National Patient-Centered Clinical Research Network (PCORnet), a PCORI initiative, the INVESTED study is making promising strides to reduce the risk of major cardiac-related events in these patients by determining what level of dosing is more effective in lowering cardiovascular or lung-related admissions to the hospital.

Although a standard yearly vaccination for influenza has been shown to reduce the risk of major cardiac-related events, preliminary data suggests that a high-dose vaccine can prove even more effective than a standard dose in decreasing the likelihood of influenza infection for individuals with heart disease. The INVESTED study team hopes to glean valuable insights that will ultimately reduce hospitalizations—and in some cases, death—of heart disease patients who contract the flu.

Piloting a Cost-efficient Approach to Research Study Reviews

In addition to its commitment to helping at-risk patients with heart disease, INVESTED is also piloting the use of a PCORnet-wide single Institutional Review Board (IRB) approach to significantly reduce the time and expense of conducting multisite collaborative clinical research studies within the network. This effort will enable PCORnet institutions to use the NCATS Streamlined, Multisite, Accelerated Resources for Trials (SMART) IRB Reliance Platform from the National Institutes of Health instead of the traditional approach of using local IRBs for each research site.

IRBs are in place to protect the rights and welfare of humans participating as subjects in research. The goal of SMART IRB is to streamline the IRB review process in multisite research, helping investigators obtain trial results faster and, ultimately, advance the development of new diagnostics, treatments, and preventative measures for patients, while maintaining strong human research protections, oversight, and regulatory compliance.

The SMART IRB maintains these ethical considerations with the use of a flexible master IRB reliance agreement that aims to simplify multisite research, as well as to support and encourage collaboration and harmonization across clinical studies. Although the NIH has mandated that all NIH-funded trials transition to SMART IRB by September 2017, PCORnet is already ahead of the game with its dedication to transitioning all its studies to this approach by the end of January 2017.

INVESTED ended its initial year in December, and data from this period are currently being analyzed to determine what benefits the SMART IRB approach brings to its multisite clinical research studies. Although more data is to come, INVESTED’s initial data analysis shows improvements in efficiencies in terms of study startup—small but significant developments that speak to the importance of this approach.

The INVESTED study is currently enrolling PCORnet sites to participate in the second year of the project.

 

About PCORnet

 PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

 About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

PCORnet Commons Offers Collaborative Space for Conversation & Ideas

The PCORnet Commons website is now live! This new online space was created collaboratively with insight and feedback from across the PCORnet community with the goal of providing people with the opportunities to increase collaboration, efficiency, and people-centeredness in clinical research. The PCORnet Commons is a space for you to share resources, engage in dialogue, grow together, and learn from one another.

On the PCORnet Commons, you can:

  • Post and share resources and ideas: Check out engagement, data and research resources to tap into the wealth of experience and expertise available through PCORnet. Or share your own innovative resources with others. (Don’t worry – you can decide how others use your materials using Creative Commons licensing)
  • Connect with colleagues and friends: Create your own profile and search for others to learn more about colleagues and how to connect with them.
  • Find, create, and participate in groups: “Groups” are Commons platforms for brainstorming new ideas, starting important conversations, and collaborating seamlessly among existing or new teams.

Over 200 individuals have already created PCORnetCommons.org profiles and over 100 people active members. Conversations are already taking place on building trustworthiness; methods and systems for developing community-generated research ideas; and overcoming challenges and finding solutions in participant-centered interventional trials.

Please consider joining the existing conversations, starting new ones, and sharing resources you think would be valuable to others at www.PCORnetCommons.org. You are also encouraged to register for an online training session on either January 23 from 12:30-1:30 p.m. EST or on January 24 from 11:00 a.m.-12:00 p.m. EST

If have questions, concerns, or would like to submit other feedback, please contact Joanna Ball at jball@geneticalliance.org

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

PCORnet Community Rallies to Launch New Version of Common Data Model

cdmv3.1
Click Image to Enlarge

PCORnet, the National Patient-Centered Clinical Research Network, is pleased to announce the release of the newest iteration of its Common Data Model (CDM), CDM v3.1. Initially released in three deployments between 2014 and 2015, the CDM is a way of organizing PCORnet’s broad and diverse data into a standard structure to enable a more rapid response to research-related questions. Now on its fourth installment, the CDM continues to reflect the hard work and input of stakeholders across the spectrum of the PCORnet community; in fact, this latest iteration of the CDM was developed in just 11 weeks, achieving an aggressive timeline with key participation by its stakeholders.

“This quick turnaround reflects the PCORnet community’s engagement and cohesion in its efforts to furthering patient-centered research, and I am proud of us for achieving this rigorous CDM development timeline,” said Shelley Rusincovitch, project leader in Applied Informatics & Architecture, Duke Clinical and Translational Science Institute (CTSI). “Ultimately, it is this type of collaborative spirit that will help PCORnet achieve its goal of bringing real-world insights to patients with greater speed and agility.”

Recognition of the need for early stakeholder engagement has been critical to the efficient and trustworthy development of the CDM. To ensure all stakeholders had a voice, PCORnet has established four different venues for feedback—a CDM Modeling Working Group, CDM Stakeholder Sessions, a CDM Implementation Forum and CDM Interest Groups—all dedicated to developing and improving each iteration of the CDM.

Unlike major releases such as CDM versions 1.0, 2.0 and 3.0, CDM v3.1 is a minor release with incremental, yet important, improvements made over the 3.0 specification. The v3.1 minor release includes:

  • Four new fields (sexual orientation, gender identity, diagnosis origin, and medication prescribing unit)
  • An expanded “encounter types” value set to include observation stays and institutional professional consults
  • A collapsed value set of procedure terminologies so that current procedural terminology (CPT) and healthcare common procedure coding system (HCPCS) medical codes are grouped into a single category
  • Clarification around the expected number of digits for relational database management system (RDBMS) number formatting
  • Elimination of the date of death requirement field for death table
  • An enrollment table basis that now includes drug coverage

CDM v3.1 has been formally released and is publically available here; in addition, a lay version of the 3.0 model can be accessed here. This is an important milestone, and will be followed by development for implementation by PCORnet Clinical Data Research Networks (CDRNs). No immediate action needs to be taken by the PCORnet CDRNs and Patient Powered Research Networks (PPRNs), who will continue to use CDM v3.0 with the current cycle.

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.  

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

PCORI Annual Meeting Sheds Light on PCORnet’s Role in Furthering Patient-Centered Research

Participant morale was high at the Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, which took place November 17-19, 2016 at the Gaylord National Resort and Convention Center in National Harbor, Maryland. Over the course of three informative days, over 300 patients and patient advocates, 200 clinicians, 400 researchers and other key stakeholders from over 100 health systems gleaned valuable insights into PCORI’s dedication to furthering patient-centered research. Notable sessions on PCORI’s revolutionary and innovative initiative, the National Patient-Centered Clinical Research Network (PCORnet), included presentations by researchers and an update on progress-to-date.

Day one kicked off with an opening address by PCORI’s Executive Director, Joe Selby, before shifting gears into a moving address by Stephanie Buxhoeveden of PCORnet’s Multiple Sclerosis (MS) Patient Powered Research Network (PPRN), who detailed her unique experience as both a provider and a patient with MS. Stephanie stressed the importance of bridging the gap between patients, researchers and caregivers to accelerate real world outcomes.

“Having sat on both sides of the table as practitioner and patient, I can tell you with confidence that patients and caregivers have just as much valuable disease expertise, if not more, than doctors,” said Stephanie. “Via PCORnet’s MS PPRN, I am taking an active role in research and putting power in the hands of the people who should have had it all along—those who are living with the condition.”

You can read more about Stephanie’s experience in this blog, which she posted in anticipation of the conference.

PCORnet also took center stage on day two of the Annual Meeting during an afternoon session that spotlighted its progress and functionality.  Participants heard from PCORnet’s Engagement, Data, and Research Committees about advancements in data infrastructure (including the most recent iteration of the Common Data Model), the research resources currently available to start conducting high-impact research, and models of engagement for participants and clinicians. Enthusiasm was high from the panelists as they celebrated PCORnet’s progress to date and urged continued and frequent early engagement from all stakeholders in the clinical research process. See the slides from these presentations here.

Many were excited that PCORnet is now open for business with a robust data model and encouraged everyone in the room to participate and help inform better ways to use data.

Day three included an all-day session on “PCORnet in Action: The Journey Toward People-Driven Research Transformation.”

Joe Selby, Executive Director PCORI and Heather Holderness, Research Associate Oregon Health and Science University, Department of Family Medicine (ADVANCE CDRN)
Joe Selby, Executive Director PCORI and Heather Holderness, Research Associate
Oregon Health and Science University, Department of Family Medicine (ADVANCE CDRN)

Joe Selby kicked off the day: “PCORnet is the most ambitious visualization of a long-held dream that we can tap the power of computerized clinical data and our capacity to involve stakeholders in the research process to drive better outcomes,” he said. “What was once a visionary ‘holy grail’ has now become a core component of a national evidence generation infrastructure that is embedding itself in delivery systems and communities of patients.”

The first half of the day highlighted PCORnet research underway, including study updates on INVESTED, ADAPTABLE, the PCORnet Bariatric Study, Healthy Mind, Healthy You, and Identifying and Predicting Patients with Preventable High Utilization.

The second part of the day included a poster session that included 16 PCORnet study posters.  Search and see all posters here.

Finally, the day wrapped up with a look at how to access PCORnet resources, including sessions about data characterization, SMART IRB, engagement best practices from demonstration studies and plans for the upcoming PCORnet Commons. You can access all PCORnet slides for day three here.

Many thanks to all who participated in this exciting event on behalf of PCORnet and contributed to its success. If you were unable to attend the PCORI Annual Meeting in person, you can still watch archived webcasts of plenary sessions, and blog posts from meeting presenters, including Stephanie Buxhoeveden and Megan O’Boyle from the Phelan-McDermid Syndrome Foundation here.

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

Guest Blogs Generate Buzz in Advance of PCORI Annual Meeting

The Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting on November 17-19, 2016 is approaching quickly, and two of its scheduled speakers are building momentum for the event with the publication of guest blogs detailing their clinical research experience. Although both blogs offer a unique perspective, both describe their authors’ personal passion to further PCORI’s mission to build and enhance patient-centered research. 

The first blog is authored by Megan O’Boyle, whose 16-year-old daughter suffers from rare disease called Phelan-McDermid Syndrome (PMS). An active member of PCORnet’s Phelan-McDermid Syndrome Data PPRN, Megan knows all too well how lack of real-world data access can stall progress toward rare disease therapies – and how PCORnet is positioned to reverse this trend. Read her recent blog in anticipation of the event here.

The second blog was written by Stephanie Buxhoeveden, a Multiple Sclerosis (MS) patient and a neurology nurse practitioner specializing in MS. Stephanie will be speaking at the PCORI Annual Meeting about her experience furthering patient-centered research alongside PCORnet’s MS PPRN, iConquerMS. Click here to read her PCORI Annual Meeting pre-event blog in full.

Click here to see the PCORI Annual Meeting’s agenda in full. Can’t make the event in person? Follow us on Twitter for live tweets during the meeting that will keep you up-to-date on highlights and available webcasts.

 

About PCORnet

PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.

About PCORI

The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.