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PCORnet Blog

The Unsung Role Caregivers Play in People-Driven Research

Valentine’s Day is upon us, but when you are a caregiver for someone, there’s no need for a special day to show your love. For the 43.5 million unpaid caregivers in the United States, unconditional care that goes above and beyond is a constant daily practice. It’s not a stretch to say that these caregivers are society’s unsung heroes. They are the medical schedulers, the insurance organizers, the medicine administrators, and the health care advocators. They often know the answers to dosage and symptom questions better than the patients they support. This deep knowledge makes caregivers an important, albeit often overlooked, resource for researchers.

More on Phelan-McDermid

To learn more about Phelan-McDermid Syndrome and PCORnet’s commitment to effective engagement in other rare disease research areas, check out this story:

Diversity, Communication and Trust: Three PPRNs Share the Recipe for Effective Engagement in Rare Disease Research 

To shed more light on the caregiver role and how it can improve people-driven research, we talked to Megan O’Boyle. In addition to being a caregiver to Shannon, her 17-year-old daughter with Phelan-McDermid syndrome, O’Boyle is the principal investigator for the Phelan-McDermid Syndrome Data Network, a partner network of PCORnet, the National Patient-Centered Clinical Research Network. PCORI, which was authorized by Congress in 2010, launched PCORnet as its most ambitious initiative to date. As Shannon’s caregiver, O’Boyle navigates symptoms ranging from sleeplessness to seizures and serves as her daughter’s advocate in schools, hospitals, doctors’ offices, and more.

PCORnet: Can you tell us a little background on your personal experience with research as a caregiver?

O’Boyle: When I was first getting my feet wet as a caregiver for Shannon, I noticed there were two kinds of moms: those who dove headfirst into every opportunity to move research forward and those who were overwhelmed with the massive responsibilities that often come with caregiving and consistently opted out. I was solidly in the second camp! It wasn’t that I was complacent about my daughter’s condition; no mom is. We all fight fiercely to give our child the best life possible. I wasn’t interested in research because I didn’t think the outcomes from any study would be helpful to her in her lifetime, and I wanted to put my energy instead toward helping Shannon in other ways. But the Phelan-McDermid Syndrome Foundation persisted, and I reluctantly tiptoed into the research waters. Now, here I am, years later, the principal investigator for an entire research network.

PCORnet: What changed your mind on participating in research?

O’Boyle: It was a couple of things. First, I learned that, contrary to what I initially thought, there is research going on right now that can make a tangible difference in Shannon’s life. I used to think of research in terms of “a cure.” But that’s not really how progress is usually made. There are a lot of smaller steps on the road to a cure that allow us to understand the disease more so we can improve the quality of life for our loved ones. The second thing that changed my perspective was the realization that because Shannon’s condition is very rare (only about one in 10,000 people are affected), there is a much lower awareness and motivation to propel research than there is with more common conditions, such as autism or diabetes. Phelan-McDermid syndrome caregivers are a very small group of people armed with the insights needed to bring about solutions for our loved ones. If we didn’t join forces and make our voice heard in the research community, who would?

PCORnet: How can caregivers add unique value to the research community?

O’Boyle: The value and power of caregivers has been underestimated in the past, but researchers are increasingly seeking these perspectives in research studies. Caregivers bring insights that are different from the patient perspective, but equally valuable. We tend to keep excellent records of our loved ones’ health status. While a patient may be fuzzy on what day or time a symptom occurred, we remember these things in detail. We are also extremely compliant, maybe even more so than patients. For example, I may forget to take my own prescription and think it’s no big deal, but there is no way I would let my daughter miss a treatment. Caregivers also bring a strong sense of motivation to the table. We often feel helpless watching our loved ones suffer. Research empowers us.

PCORnet: What advice would you give to caregivers who are considering research participation?

O’Boyle: Caregivers often don’t realize their own power. I hear feedback all the time from caregivers who ask, “What could I possibly offer? I’m not an expert in this disease. I’m not a doctor.” Even though you may not have gone to medical school, living with a condition day in and day out 100 percent qualifies as expert status. So, I would tell caregivers to not be intimidated by research and to recognize how valuable they are to bringing results to patients. At the same time, don’t feel as though you have to dive into the deep end of research. There are many smaller ways to participate. Even just joining a registry is a great way to help that requires very little time investment.

PCORnet: Any final thoughts?

O’Boyle: The funny thing about being a caregiver is that no one ever sets out to become one. It falls in your lap, turns your life upside down, and at that point you can shape your experience in a variety of ways. I think back now to the leaders at the Phelan-McDermid Syndrome Foundation who nudged me toward research, and I am grateful because it ignited a passion I didn’t even know was there. If sharing my story helps someone else down that same path, I’ll feel like I have paid it forward.

 

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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

PCORnet Leaders Accept New Roles with Research and Data Committees

The new year brought additional opportunities for network members to participate in PCORnet’s governing committees. The PCORnet Council is pleased to welcome several colleagues to new roles within the Research and Data Committees.

Keith Marsolo will now serve as chair of PCORnet’s Data Committee. Marsolo is an associate professor in the division of Biomedical Informatics at Cincinnati Children’s Hospital Medical Center. His research focuses on how to obtain meaningful insights from electronic health records at scale through the use of common data models. He is a co-investigator in the ImproveCareNow partner network as well as the PEDSnet partner network. As chair of the Data Committee, Marsolo also joins the PCORnet Executive Committee as a non-voting member.

Russ Waitman, our former Data Committee chair, will remain on the Data Committee as a member. Waitman is an associate professor of Internal Medicine, director of Medical Informatics, and associate vice chancellor for Enterprise Analytics at the University of Kansas Medical Center. He is currently the co-principal investigator for the Greater Plains Collaborative partner network.

Also joining the Data Committee as a member is Mark Weiner, assistant dean for Informatics and professor of Medicine and Clinical Sciences at Temple University’s Lewis Katz School of Medicine. Weiner is the informatics lead for Temple as part of the PaTH partner network. His research interests and work help to bridge the gap between health services research, clinical and research operations, quality improvement, and medical informatics.

On the Research Committee, we are extending a welcome to James McClay, who will now serve as a member. McClay, an associate professor of Emergency Medicine and chair of the Biomedical Informatics graduate program at the University of Nebraska Medical Center, is the Greater Plains Collaborative co-principal investigator. He is internationally recognized for his work developing innovative methods for the capture, encoding, and reuse of clinical data to improve the quality and safety of health care.

Congratulations to all of these members on their new roles!


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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

Promises Kept and New Resolutions: PCORnet’s Year in Review

As we close the door on 2017 and begin a new year, it’s a good time to ask: has PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, remained steadfast in its mission? We pledged to enable people to make informed healthcare decisions by conducting clinical research that is better, faster, less expensive, and more relevant to their needs than what is currently possible. How did we do? What will we work toward in the year to come? ‘Tis the season for reflection and resolutions, so let’s dive in.

Better Research Through the Common Data Model

PCORnet taps data from numerous sources, which is what makes it such a valuable tool for researchers. But having numerous data sources adds complexity, too. That’s because seven different hospitals may capture the same heart attack in seven different ways. Enter the PCORnet Common Data Model, which is the tool that helps map these disparate sources to a common language, ensuring that there is consistency. PCORnet is constantly refining its Common Data Model, and in 2017, it celebrated the release of version 3.1., expanding the Network’s capacity to do more kinds of research in areas that are often overlooked.  While the 3.1 release in 2017 was an important stepping-stone, even more exciting changes are on the horizon in 2018.

“In early 2018, we are set to
release Common Data Model 4.0,
which is going to include additional
tables where our partner networks
can store more data.

Lesley Curtis, PhD – PCORnet Data Committee Member

“In early 2018, we are set to release Common Data Model 4.0, which is going to include additional tables where our partner networks can store more data,” said Lesley Curtis, PCORnet Data Committee member. “These tables represent a big step forward for us because they will allow PCORnet to answer a broader range of questions that are important to our patient communities with greater precision.”

Faster Research Through New Data Sharing Agreement and SMART IRB

Institutional reliance forms and agreements may not be the most tantalizing piece of the clinical research pie, but they are vital in ensuring all stakeholders are on the same page when it comes to important issues like data privacy and the protection of research participants. They can also create a snag for study start-up and hinder progress if not implemented correctly with study teams and PCORnet partners. That’s why in 2017, PCORnet released a new data sharing agreement for its sites that clearly defines the standard terms that the PCORnet Coordinating Center will adhere to when it receives data from PCORnet’s partner networks. Version 2.0 of the data sharing agreement was released in May 2017.

PCORnet also worked in coordination with the National Institutes of Health’s National Center for Advancing Translational Sciences to further participate in the SMART IRB Reliance Platform. Institutional review boards were put in place to protect the rights and welfare of people participating in research. Approval of these boards is an important step in the research process, but having each site’s board review the same protocol is often time consuming, slowing down study start-up. The goal of SMART IRB is to maintain the rights and welfare of people participating in research while reducing unnecessary burdens. PCORnet has a unique opportunity to use SMART IRB within the Network, while simultaneously providing feedback and harmonizing its effort with the National Institutes of Health and other research entities.

Less Expensive Research via the PCORnet Front Door

Wouldn’t it be nice if reliable clinical research was not only faster, but also less expensive? With PCORnet’s Front Door, we are getting closer to that vision. In 2017, PCORnet opened its Front Door, offering potential investigators (including patient groups, healthcare organizations, clinicians, government, industry scientists, and sponsors) a central gateway to access and leverage PCORnet’s unique infrastructure and collaborate on patient-centered clinical research. Via the Front Door, investigators can request access to the PCORnet Distributed Research Network Operations Center to obtain aggregated data results for informing research project development. They can also find potential collaboration opportunities at a fraction of the time and cost than was previously possible. But you don’t have to take our word for it. Robert McBurney, co-principal investigator for the iConquerMS partner network, raved about his Front Door experience.

“As a user of the Front Door, we
were able to quickly reach
networks and clinics we normally
would spend weeks trying to connect with.

Robert McBurney, PhD – Co-PI, MS-PPRN, iConquerMS and CEO of the Accelerated Cure Project for MS

“I cannot overstate the tremendous value PCORnet’s Front Door provided my team of investigators. Every step of the process was thorough and efficient,” said McBurney. “As a user of the Front Door, we were able to quickly reach networks and clinics we normally would spend weeks trying to connect with.”

Research That Matters Through Collaborative Research Groups

Who should decide what questions need answering? Clinicians? Patients? Caregivers? Researchers? If we want to conduct research that is meaningful, the answer is: all of the above. That’s why PCORnet announced the launch of 11 Collaborative Research Groups in 2017. These groups, which focus on a specific disease area or community, are composed of people across multiple disciplines and are focused on looking at health challenges holistically to prioritize the research questions that will best help patients and clinicians make more informed healthcare decisions.

These groups also consider PCORnet’s infrastructure and how it can best be used to find answers to these questions. Their deep knowledge of the Network means that Collaborative Research Groups can identify funding opportunities where PCORnet is uniquely positioned to make the most impact.

Looking Ahead: a Sustainable PCORnet via the People-Centered Research Foundation

It was always PCORI’s vision for the Network to become a self-sustaining resource for the nation. To that end, in 2017 PCORnet investigators formed the People-Centered Research Foundation. This nonprofit is intended to advance and support the Network’s long-term sustainability.

PCORI’s principles of patient-centeredness and engagement are deeply embedded in the People-Centered Research Foundation, and the nonprofit boasts an all-star leadership team. Former Food and Drug Administration Commissioner Robert Califf chairs the foundation’s distinguished Board of Directors, and Kathy Hudson, former deputy director for Science, Outreach, and Policy at the National Institutes of Health, is its chief executive officer.

With these big changes already in play, 2018 is gearing up to be an exciting time for PCORnet. Stay tuned for more announcements in the coming months, and in the meantime, let’s all raise a glass to PCORnet’s productive 2017 and a healthier future to come for our nation.

 

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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

Call for Abstracts: 2018 AcademyHealth Annual Research Meeting

The 2018 AcademyHealth Annual Research Meeting (ARM) is a great opportunity to showcase PCORnet research. ARM, which will take place Jun. 24-26 in Seattle, Washington, is now accepting abstracts for panels on critical and emerging issues in health services research, policy roundtables, research panels, student posters, and abstract sessions. The abstract submission deadline is January 11th.

One of the themes highlighted in ARM’s call for abstracts is “Patient-Centered Research,” including:

  • Sharing best stakeholder engagement strategies to successfully conduct patient-centered outcomes research (PCOR).
  • Generating PCOR/comparative effectiveness research (CER) evidence within PCORnet: Challenges and Opportunities.
  • Developing new PCOR/CER methodology and strategies.
  • PCOR influence on policy and national research directions.
  • Reporting on patient-centered interventions in clinical trials.
  • Designing and testing of individually tailored interventions in research.
  • Engaging patients and families as partners in research studies.
  • Determining value of engagement in dissemination and implementation.
  • Learning lessons from PCORI research.

We hope that many PCORnet networks and studies have the opportunity to highlight their work at this conference. If your abstract is accepted, please contact Jenny Cook on the PCORnet communications team so we can highlight your work. Good luck!

 

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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

PCORnet Blog

Invisible No More: COPD PPRN Moves Research Forward to See the Full Picture

AuthorsElisha Malanga is the Chief Research Officer of the COPD Foundation, a patient-led advocacy organization dedicated to improving the lives of those affected by COPD and the prime organization for the COPD Patient-Powered Research Network (COPD PPRN). She has worked with the COPD Foundation since 2008 and has led numerous efforts including the creation of the Foundation’s peer reviewed scientific journal, Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation.

Richard A. Mularski, MD, MSHS, MCR has been involved with the COPD PPRN from inception and is a founding Co-PI. He is a senior investigator at The Center for Health Research, Kaiser Permanente; an affiliate associate professor of medicine at Oregon Health & Science University; and senior physician with board certifications in pulmonary medicine, critical care medicine, internal medicine, and palliative medicine.

Cara B. Pasquale, MPH is the director of the COPD PPRN as well as a Co-PI. She has worked with the COPD Foundation since 2014 and has helped build the overall structure and governance of the COPD PPRN and works directly with patient partners. She has 11 years of work experience in coordinating and managing projects and 8 years of public health experience including working with researchers to translate their work into policy, systematic literature reviews, and engaging stakeholders for large scale collaborations.


People living with COPD, or chronic obstructive pulmonary disease, often describe COPD as an “invisible disease” that is underdiagnosed, under researched, and underfunded. COPD is an umbrella term used to describe many lung diseases that often get worse over time, including emphysema, chronic bronchitis, refractory asthma, and severe bronchiectasis. Approximately one in five Americans over the age of 45 suffer from COPD. It is the third leading cause of death in the United States.

November is COPD Awareness Month

Ways to Get Involved:

  • Web-based platform, COPD360social.org, helps patients and caregivers unite as a community.
  • Check out online campaigns that highlight COPD stories.
  • “Go Orange” with the COPD Foundation to promote COPD awareness.

Learn more at COPDfoundation.org

To address the urgent research needs of people living with COPD, the COPD Foundation and the Center for Health Research at Kaiser Permanente Northwest founded the COPD Patient-Powered Research Network (COPD PPRN) within PCORnet, the National Patient-Centered Clinical Research Network. PCORnet is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The COPD PPRN brings together thousands of COPD patient partners and those at risk, offering them the opportunity to share their information and participate in research. To date, over 6,400 people have shared their experiences through surveys and agreed to participate in research that is meaningful to them.

Now, thanks to a collaborative effort between the COPD PPRN and another PCORnet partner network, information gaps surrounding COPD may be able to be filled quicker. In 2016, the COPD PPRN began a collaboration with the Patient Outcomes Research to Advance Learning Clinical Data Research Network (PORTAL CDRN). PORTAL brings together three leading health care delivery systems (Kaiser Permanente, HealthPartners, and Denver Health) and their affiliated research centers along with patients, clinicians, and operational leaders.

This collaboration between the two PCORnet partner networks has allowed the organizations to marry COPD PPRN patient-reported information with PORTAL’s electronic health records from participants in the Kaiser Permanente Northwest healthcare system. Electronic health records usually capture clinical information such as tests, diagnoses, and events like hospitalization. Information reported by COPD PPRN participants often includes patients’ perceptions of their quality of life (for example, whether or not they are able to go to work, how much pain they experience, or how often they are in the hospital). Combining these data sources will ensure that the experiences of people living with COPD are included in research and make the data stronger.

Collaborators at Kaiser Permanente Northwest built a system to safely allow the transfer of their data to the COPD PPRN. The COPD PPRN then integrated this data by using the PCORnet Common Data Model format. Now that the data integration is complete and validation testing successful, the COPD PPRN is exploring ways to scale the process, such as using this method in the response to funding opportunities. Ultimately, it hopes to use the process and technology it developed to link with more CDRN sites across PCORnet and other health systems.

People living with COPD, just like people with other diseases represented across PCORnet, are eager for the answers that patient-centered outcomes research might be able to provide. Large datasets that bring patients’ clinical data together with patient-reported experiences and preferences could provide researchers with the ability to develop, test, and implement better, personalized treatment strategies.


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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

Unlocking Patient and Caregiver Partnerships in Obesity Research: ObesityWeek 2017

As researchers dive into the details of obesity science, they are learning that, like most mechanisms of the human body, obesity is a result of myriad factors at play. In simpler terms, if the relationship between excess weight and the human body were to have a Facebook status, it would almost certainly be: “it’s complicated.”

PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, has been an integral component in unlocking what we don’t know about obesity. At ObesityWeek 2017, an international event focused on the science, clinical application, surgical intervention, and prevention of obesity, PCORnet colleagues showed attendees the latest research they’ve uncovered. Many PCORnet representatives were part of ObesityWeek, which took place on Oct. 29 to Nov. 2 in Washington, D.C. However, this recap will focus on how patient, caregiver, and other stakeholder partnerships have informed two important PCORnet demonstration studies: the PCORnet Obesity Observational Study: Short-and Long-term Effects of Antibiotics on Childhood Growth (ABX) and the PCORnet Bariatric Study.

ABX: How Will Parents Respond?

Parents and pediatricians often reach for antibiotics to treat middle ear infections, strep throat, fevers and other common ailments of childhood. But some research suggests that doing so increases those children’s risk of obesity in early childhood. The ABX Study is using PCORnet’s vast network to tap routinely collected medical data from nearly 700,000 children. The study has looked at the relationship between these children’s weight trajectory and early antibiotic exposure.

At ObesityWeek, Jason Block, principal investigator of the ABX study, shared that ABX established a cohort, or group of patients, that were exposed to antibiotics under the age of two and tracked their weight at the age of five. He presented initial results, and the study team’s next steps to explore the relationship between antibiotic use and weight gain to determine how growth patterns vary by subgroups. Final study results are expected soon.

Bill Heerman, also presented on the results of a focus group that relates to the ABX study. His research asks: even if early exposure to antibiotics does raise the risk of obesity, would parents withhold the medication? His team conducted eight focus groups at four PCORnet sites to find out. The answer? In a nutshell, probably not. In a setting of acute illness for their children, the long-term impact of obesity is not a major factor in parent decision-making. Parents placed greater value on the short-term comfort of their children than the longer-term potential risk of obesity, especially if the risk was small.

The Bariatric Study: What are Patients’ Communication Preferences for Long-Term Weight Loss Surgery?

When it comes to bariatric surgery, a type of surgery intended to achieve weight loss, it turns out that one size definitely does not fit all. PCORnet’s Bariatric Study is comparing the health benefits and safety of the three main types of weight-loss surgery patients commonly undergo today: roux-en-y gastric bypass, adjustable gastric banding, and sleeve gastrectomy. Leveraging the PCORnet Common Data Model to organize data into a standard structure, the Bariatric Study is collecting health data from thousands of adults and hundreds of adolescents who underwent bariatric surgery in 2005 through 2015. The study is following these patients for up to five years after surgery to estimate the one-, three-, and five-year benefits and risks of each procedure. Why do we need this study? Just ask the patient co-principal investigator for the Bariatric Study, Neely Williams, who explained what it was like to be part of a diverse patient community seeking bariatric surgery in her opinion editorial in The Tennessean.

At ObesityWeek, Co-Principal Investigator David Arterburn, presented some of the initial results of the Bariatric Study. Specifically, he and his study team offered preliminary insight into which surgical procedure—roux-en-y gastric bypass, adjustable gastric banding, or sleeve gastrectomy—resulted in the most long-term weight loss based on an observation of more than 46,000 adults. Final study results are forthcoming.

Another key aim of the PCORnet Bariatric Study is to uncover patients’ communication preferences around 1) the risks and benefits of bariatric surgery; 2) which bariatric procedure to use; and 3) the optimal follow-up care after bariatric surgery. The study team is interviewing surgeons about their preferences, too. At ObesityWeek, key partners in the Bariatric Study, including the Obesity Action Coalition, organized “empathy exercises” to share some of what they have learned, allowing people to better understand some of the quality-of-life issues faced by people with obesity. They also hosted and participated in a weight bias Tweet Chat, asking patients and researchers to talk about obesity stigma and how it affects care decisions and delivery.

ObesityWeek was a success, offering many PCORnet colleagues a chance to involve patients, parents, and the larger research community in their work—a core tenet of PCORnet’s mission. If you missed the event, but would like to join the conversation, follow #OW2017 online. In addition, check back here for study updates and results.

 

 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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

2017 PCORI Annual Meeting Features PCORnet Research and Opportunities

“Delivering Results, Informing Choices.” That was the theme of the 2017 Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting, and PCORI naturally wanted to showcase how its most ambitious effort to date is bringing that theme to life. That’s why it’s no surprise that PCORnet, the National Patient-Centered Clinical Research Network, was front and center at the event, which was held Oct. 31–Nov. 2 in Arlington, Virginia.

In fact, a full-day workshop titled, “PCORnet in Action: Utilizing PCORnet for Research,” was a central component of the Annual Meeting. Speakers at the workshop shared how researchers are beginning to use PCORnet the way its creators always envisioned: to ask and answer the questions that matter most to patients in a way that makes research faster and better than it has been to date.

Showcasing Studies

The workshop included three panel discussions, with the first featuring actual users of PCORnet who discussed how the Network added value to their studies. These speakers also showed how the studies are engaging patients and providers, an important part of PCORI’s mission. A highlight was Rebekah Angove, engagement director of the REACHnet partner network, who talked about her work with the Louisiana Experiment Assessing Diabetes (LEAD) study. This study is looking at how policy changes are affecting patients with diabetes in Louisiana. Angove outlined some of the strategies her study team is using to ensure that the voices of patients and clinicians are included.

Building on Angove’s discussion of patient engagement, Andrew Nierenberg, principal investigator of the Mood Network, talked about PCORnet’s ability to grow existing relationships where trust is already established.

“Trust is the engine for
adding value to a study.

Andrew Nierenberg, MD – PI, Mood Network

In fact, he said he’s seen it first-hand in his work with the Healthy Hearts Healthy Minds and Healthy Mind Healthy You PCORnet demonstration studies, which are looking at the effect of practicing mindfulness with different patient groups. “Trust is the engine for adding value to a study,” he said.

Finally, Maureen Smith, principal investigator of the ADVANCE partner network, described another PCORnet demonstration study, which is looking at ways to design a better system for managing the health information of older patients. Older patients often see multiple physicians and frequently receive health care from emergency departments and hospitals. This study allowed multiple health systems to compare the effectiveness and cost of their Case Management Programs to other health systems, while remaining de-identified. That way, if one health system showed patients with better outcomes than another, it wouldn’t be public, and yet systems could still use the information to improve their programs. Smith said that many health systems could benefit from PCORnet’s networked infrastructure and Common Data Model.

Getting to Know PCORnet Resources

The second panel discussion focused on the resources available through PCORnet. Kiely Law, principal investigator of the Interactive Autism Network, specifically called out the efforts of the PCORnet Engagement Committee, which seeks to equally and effectively engage people in research. Tim Carey, principal investigator of PCORnet’s Mid-South partner network, and Keith Marsolo, a member of the PCORnet Data Committee, presented information on other important PCORnet resources: the PCORnet Front Door, Collaborative Research Groups, the data curation process, and the Common Data Model.

The third panel discussion looked at examples of recently launched projects that are using PCORnet resources. Thomas Carton, principal investigator of the REACHnet partner network; Sara Loud, an investigator with the iConquerMS partner network; and Betsy Shenkman, principal investigator of the OneFlorida partner network, each described the experience of using PCORnet to achieve three very different aims. Carton leveraged a Collaborative Research Group to form partnerships between researchers and the Center for Disease Control and Prevention (CDC) in order to quickly develop a study proposal on curbing opioid use, while Loud shared how her team used PCORnet to quickly identify 11 sites to collaborate on a proposal for a multiple sclerosis study. Finally, Shenkman discussed how her team used the Front Door to identify potential participants for a project about hypertension.

PCORnet Plenaries and Posters

It wasn’t only during the workshop but also throughout the Annual Meeting that PCORnet leaders participated in panel discussions. Sharon Terry, co-principal investigator of the PCORnet Coordinating Center and chair of the Engagement Committee, and Stephanie Buxhoeveden, an Engagement Committee member in the iConquerMS partner network, participated in a panel discussion on giving people access to research results that matter. Both panelists stressed that patients should receive data collected during clinical studies, including their own individual patient data and full research results from the study.

PCORI’s Take on the
Annual Meeting

Wondering what PCORI thought of the Annual Meeting? Check out Executive Director Joe Selby’s blog, where he shares the moments he found most inspiring!

Poster sessions throughout the Annual Meeting also featured PCORnet work. Posters highlighted study results, as well as lessons learned from PCORnet partner networks related to topics such as community building, data linkage, and stakeholder engagement.

If you were unable to attend the PCORI Annual Meeting in person, you can watch archived webcasts of plenary and breakout sessions. Interested in PCORnet activities at the Annual Meeting? You can access presenters’ slides from the PCORnet in Action Workshop and the PCORnet posters .

 

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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

Academic Medicine Features PCORnet Partner Network OneFlorida

Florida is an ideal place to conduct clinical research in real-world settings where people receive healthcare. As the state with the third highest population in the country, Florida is known for its racial, ethnic, and geographic diversity. This makes it well suited to test how healthcare practices impact a broad range of people. However, to tap into the power of Florida’s diversity, clinicians, academic healthcare centers, and community partners need to work together.

Academic Medicine, the journal of the Association of Medical Colleges, featured a report in its November 2017 issue describing how the OneFlorida Clinical Research Consortium is joining stakeholders from across the state to make research better and faster than it is today. OneFlorida is a partner network in PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative.

The report describes how the University of Florida, Florida State University, and the University of Miami joined forces to form OneFlorida. It also explores the network’s programs, as well as the demographic and health status of its patients.

 

 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 continuously seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.

When Opportunity Knocks: PCORnet’s ‘Front Door’ Offers Researchers Fast, Easy Access to Rich Data

PCORnet, the National Patient-Centered Clinical Research Network, a PCORI initiative, is increasingly generating buzz as a game changer in clinical research. The Network has been described in many ways: a bridge that unites patients, families, providers, and researchers; a learning health system with the power to drive more meaningful, faster, and less costly patient-centered insights; and a collaborative platform that offers researchers access to large amounts of previously untapped health data collected in everyday patient care settings.

While all of these points are important and compelling, one of the most fundamental questions about PCORnet is often overlooked: how does one actually use it?

The answer starts with PCORnet’s Front Door feature, which is now open to all interested investigators. Managed by the PCORnet Coordinating Center, the Front Door gives potential investigators, including patient groups, healthcare organizations, clinicians, government, industry scientists, and sponsors, a central gateway to reach PCORnet resources. Via the Front Door, investigators can query data, find potential collaboration opportunities, and more.  Since it launched, several researchers have already leveraged PCORnet’s rich opportunities and data assets for their studies, including research veteran Robert McBurney.

Currently the co-principal investigator for the Multiple Sclerosis Patient-Powered Research Network (MS-PPRN), iConquerMS, and CEO of the Accelerated Cure Project for Multiple Sclerosis, McBurney is no stranger to clinical research. Last year, while pursuing funding for a multiple sclerosis (MS) study, McBurney sought out the Front Door to determine if PCORnet’s resources were the right fit for the study, as well as to connect with PCORnet investigators to collaborate on study planning.

“I cannot overstate the tremendous value PCORnet’s Front Door provided my team of investigators. Every step of the process was thorough and efficient,” said McBurney. “As a user of the Front Door, we were able to quickly reach networks and clinics we normally would spend weeks trying to connect with, and, once connected, we found ourselves diving into a wide range of data, including several interesting demographic populations that are crucial to the advancement of MS treatments.”

“I cannot overstate the
tremendous value PCORnet’s
Front Door provided my team
of investigators. Every step of the
process was thorough and efficient.

Robert McBurney, PhD – Co-PI, MS-PPRN, iConquerMS and CEO of the Accelerated Cure Project for MS

McBurney took full advantage of a broad range of offerings through the Front Door, beginning with compiling an official Letter of Intent for the proposed study and submitting a Request for Collaborators and a PCORnet Query. He worked closely with the PCORnet Coordinating Center to ask his research question to thousands of people across the country at the same time, seek out potential collaborators, and determine his study’s feasibility. What’s more, he accomplished all of this in a few weeks as opposed to the months-long process typically experienced without PCORnet’s help.

Melanie Canterberry, senior analyst for REACHnet, a PCORnet Clinical Data Research Network, is another user of PCORnet data. In a conversation with the Centers for Disease Control and Prevention (CDC), she learned of a need for health data to monitor and evaluate an expansion of the nation’s screening program for latent tuberculosis infection (LTBI). Canterberry found herself in the perfect position to dive into PCORnet’s resources. Her goal was to obtain baseline data about LTBI within the PCORnet Common Data Model (CDM) to establish feasibility for the CDC study.

“After a group meeting to outline the needs of the CDC, working within PCORnet allowed us to compile a set of TB/LTBI-focused preliminary results for the CDC from two CDRNs in about two to three weeks,” said Canterberry. “One success factor for us was the CDC’s well-defined needs and familiarity with medical codes used in the CDM, which allowed for efficient query development and ensured we were able to provide them with useful results to inform their study.”

As a collaborative platform and a learning health system, PCORnet is taking insights learned from McBurney, Canterberry and other PCORnet users to continuously improve the resources available to the public through the Front Door. In the meantime, the Front Door remains open to all relevant stakeholders seeking a more efficient, less costly method of clinical research. Users have the option to submit a request for Study Feasibility Review, Data Network Queries, Network Collaborators, and/or PCORnet Study Designation.

Want more information? Email us your questions or submit a request for information or consultation at [email protected]. We look forward to working with you!

 

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.

Attending AMIA 2017? Here’s What You Need to Know

The American Medical Informatics Association (AMIA) is set to hold its biggest conference to date on November 4-8, 2017, in Washington, DC. Numerous PCORI and PCORnet colleagues will be there sharing leading-edge scientific research. AMIA’s 2017 Annual Symposium will host over 100 scientific sessions, presenting work spanning translational bioinformatics, clinical research informatics, public health informatics, and more. This year, the symposium revolves around the theme “Precision Informatics for Health: The Right Informatics for the Right Person at the Right Time,” which speaks to the heart of PCORnet’s people-centered mission.

Are you attending the meeting? Please support your PCORI and PCORnet colleagues by joining the sessions listed below. You can also download the schedule, follow and continue the conversations online @AMIAInformatics #AMIA2017.

Presenter What When
Hossein Estiri Applying unsupervised learning to characterize rare observations in clinical data: the DQe-p tool Monday, November 6: 10:30-10:48am
Gunston
Jeffrey Klann Web-Service-Enabled Apps for Research: SMART-on-FHIR for OMOP and PCORNet   Monday, November 6: 11:00-11:30am
Lincoln West
Keith Marsolo Laura Qualls
Bradley Hammill Jeffrey Brown
The PCORnet Learning Cycle Tuesday, November 7: 8:30-10:00am
International Ballroom West
Jon Puro Social and Behavioral Determinants of Health: Fundamental Informatics Challenges for Enriching Health IT Systems Tuesday, November 7: 1:45-3:15pm
Georgetown
Jeffrey Klan Reuse of PCORnet Data to Support the Precision Medicine Initiative: Data Model Harmonization Tuesday, November 7: 2:21 PM–2:39 PM
International Ballroom Center
Jiang Bian Implementing a Hash-based Privacy-Preserving Entity Resolution Tool in the OneFlorida Clinical Data Research Network Tuesday, November 7: 5:00-6:30pm  Columbia Hall
Casie Horgan Standardization of Prescribing Data in PCORnet: RxNorm Concept Unique Identifiers in Multi-Site Research Tuesday, November 7: 5:00-6:30pm  Columbia Hall
Levon Utidjian Developing Computable Phenotypes of Pediatric Chronic Conditions in PEDSnet Wednesday, November 8: 11:42-12:00pm
Jefferson East


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.