Researchers using ORE

“On ORE, I got lengthy and thoughtful responses from people with widely different conditions and experiences. That helped me to make sure the measure really captured their experience broadly and effectively.”

- Larry Alphs

Larry Alphs, PhD, MD

Therapeutic Area Leader, Psychology, Janssen Pharmaceuticals

Dr. Alphs has made a career out of studying a typically taboo topic: suicide. But in recent years, public attention has increasingly focused on the problem and how to prevent it. Dr. Alphs’s project on the Open Research Exchange focused on creating a measure to study if a drug that Janssen has developed can help to decrease suicidal ideation and behavior within a few hours.

Dr. Alphs says other scales for suicide exist, but they consistently confound considerations that change rapidly with those that change only over long periods of time, and they don’t cover all aspects that help clinicians assess how at risk a person is for suicide. “We wanted to develop a combined patient-reported and clinician-rated scale that could better evaluate short and long term suicide risks in persons from a broad range of ages and cultures. A big part of the scale validation process was to include patients with active suicidal ideation or a history of suicide behavior who would comment on the instrument, and so better capture drivers of their thoughts and behaviors in a way they could easily understand.”

When the measure was first tested a year ago, Dr. Alphs got feedback from just 14 patients, all of whom were questioned in emergency room or hospital settings. Developing and testing the measure on the Open Research Exchange has helped him gather much deeper insights from nearly 700 people representing a cross-section of patients with chronic conditions. All were willing to share their feedback based on their own experiences with suicidal thinking.

“On ORE, I got lengthy and thoughtful responses from people with widely different conditions and experiences. They raised issues I hadn’t thought about, like which wording of questions is most sensitive and appropriate, or how important pets are to their daily lives. Their feedback helped me to make sure the measure really captured their experience broadly and effectively.”

Dr. Alphs used ORE to complete the scale’s structure. It now has ten separate components; six are patient-reported, four are for the clinician to rate based on the information the patient has provided. The scale is designed to give clinicians a better sense of the near-term and long-term suicide risk of their patients. “I hope that by developing and sharing the measure with other clinicians, we’ll be better able to evaluate how at risk someone is for suicide, and how to best treat it.”

“In the past, the only way I could collect patient feedback was if a research assistant captured something a patient happened to say. With ORE, the difference is night and day. I didn’t have to look for patients, and we had an incredible amount of feedback.”

- Ken Wallston

Ken Wallston

Professor of Psychology in the School of Nursing, Vanderbilt University

A health psychologist and mentor to university-level researchers, Dr. Wallston has long studied the relationship between health beliefs, health behavior, and health outcomes. He co-developed the Multidimensional Health Locus of Control scale (MHLC) four decades ago, which measures where control of behavior and outcomes lies. These days, he’s focused on measuring self management self-efficacy in patients with serious health conditions—a patient’s belief in his or her own ability to self manage a condition.

Dr. Wallston and his colleagues previously developed the Perceived Medical Condition Self-Management Scale (PMCSMS) and tested it with a subset of diabetes patients. When he heard about the Open Research Exchange, he was excited. “I teach survey design and know the importance of getting input as you develop a measure. I thought ORE sounded like a great opportunity to further test the PMCSMS instrument in other patient populations.”

Working with PatientsLikeMe, Dr. Wallston developed and validated his measure with feedback from more than 1,400 patients in the first test phase and 560 patients in the retest phase. Such patient feedback is critical given what Dr. Wallston studies is self-reported information and behavior. “The patient is the only person who can tell you if they’re confident they can do something. In the past, the only way I could collect patient feedback was if a research assistant captured something a patient happened to say. With ORE, the difference is night and day. I didn’t have to look for patients, and we had an incredible amount of feedback.”

Dr. Wallston hopes his latest measure ultimately becomes the “go to” instrument for studying self management self-efficacy, regardless of condition. “I might not be around, but I hope others will start using it and improve on it. That’s been my experience over the years. When others use the measures I created, my work gets better.”

Instruments developed in ORE:

Perceived Medical Condition Self-Management Scale (PMCSMS) Generic Version

“Patient feedback on ORE helps me focus on what’s most relevant. That will be the key to clinicians using the scale in the future.”

- Elizabeth Unni

Elizabeth Unni, PhD

Assistant Professor, Roseman University of Health Sciences

When Dr. Unni isn’t teaching pharmacy administration and biostatistics to students, she’s thinking about measures. More specifically, measures about medication adherence. It’s a focus that started when Dr. Unni was a graduate student.

“I came across a very popular scale that asked just four questions about medication adherence: are you forgetful in taking medicines, are you careless in taking medicines, when you feel better do you stop taking medicines, and when you feel worse do you stop taking medicines. I thought, what if you didn’t have the money to buy the medicine again, or what if you were afraid of the side effects? There were so many other potential reasons for non-adherence. That’s when I realized the scales just weren’t comprehensive enough, and I wanted to do something about it.”

Dr. Unni reviewed the literature for more common reasons for non-adherence and developed a 15-item scale as part of her dissertation grant. Later, she applied for a grant to revise and modify the measure. Today her scale has 20 items, and includes a comprehensive list of reasons people may not adhere to their medications. While it gives a broad picture, it’s often considered too lengthy a measure for use in clinical settings.

On the Open Research Exchange, Dr. Unni has developed an abbreviated version of the scale that focuses on just four types of issues or reasons for non-adherence: practical, belief, forgetfulness and medication management. And while she didn’t ask patients for feedback on her original scale, she’s doing so on ORE, and finding their feedback invaluable.

“It helps me focus on what’s most relevant to patients. That will be the key to clinicians using the scale in the future,” Unni says.

“The use of social media for medical research will change everything. We have an opportunity to learn so much so quickly. In diabetes, we have lots of questions. With ORE we’ll have access to a large panel of patients, and a group of experts who can help us pull it all together.”

- William Polonsky

William Polonsky, PhD, CDE, Pilot ORE Researcher

Behavioral Diabetes Institute and University of California, San Diego

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Diabetes patients have most of the medications, tools and knowledge they need to live long and healthy lives. Yet many do poorly. The behavioral and motivational aspects of diabetes are key; how patients talk themselves into making and maintaining positive behavior changes significantly affects how healthy they become.

One of the first clinical health psychologists in the U.S., Dr. Polonsky has dedicated his career to helping patients with diabetes, conducting research to examine the disease’s critical psychological factors, and lecturing and training healthcare professionals so they can help patients help themselves. His team is already collecting interesting new data with the diabetes distress scale, a measure they developed several years ago. The scale he developed on ORE is what he calls the WHY STOP scale. It’s an attempt to understand if you’re eating a meal, how do you decide you’re done and it seeks to determine how new diabetes medications seem to affect people’s satiety, or how full they feel when they eat. Type 2 diabetes is often associated with obesity; there are several new medications that can help many, but not all, patients manage their weight. Is there something psychological at work that may interfere with the efficacy of these drugs, such that patients may fail to notice medication-enhanced feelings of satiety? On ORE, he created the first instrument to understand when and how these medications affect people, and how other patients can make better use of them.


“On ORE I expect to get a better representation of a domestic population than just one small geographic area, one physical office with a certain philosophy, or one that favors a specific anti-hypertensive medication or treatment regimen over another. It’s a convenient way to tap into a number of patients who are willing to participate in research.”

- Tamara Kear

Tamara Kear, PhD RN, CNS, CNN, Pilot ORE Researcher

Villanova University and Fresenius Medical Care

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Tamara Kear’s clinical background includes over 20 years’ practice as a nephrology nurse caring for patients with chronic kidney disease. Over the past three years, her research has focused on hypertension, one of the factors prompting a rise in kidney disease.

Tamara has developed an instrument for practitioners that helps them see how well a patient is doing at home, and identify barriers they are experiencing in managing their hypertension. Her goal is to develop a more complete tool than any existing today. In her view, tools today don’t dig deep enough to ask patients what they are actually doing. Tamara wants to create a single page questionnaire that patients can easily and quickly complete to help their practitioner clearly see any barriers.

The ORE platform provided the ideal forum to create and test Tamara’s questionnaire. There were more than 1,000 PatientsLikeMe members with hypertension across the U.S. who are available to provide feedback. In her experience, the researcher who is willing to develop the right tool and ask the right questions will find the best information directly from the expert – the patient living with the disease.

“ORE is helping ABIM gauge patient reactions to questionnaire questions, to ensure that the questions reflect patients’ real-life experiences.”

- Gerald Arnold 

Gerald Arnold, PhD, MPH, Pilot ORE Researcher

Rebecca Baranowski, MEd, MS, Pilot ORE Researcher

American Board of Internal Medicine (ABIM)

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The American Board of Internal Medicine (ABIM) is a nonprofit, independent evaluation organization. Its certification marks the highest standard for internal medicine, signaling that internists have the clinical judgment, skills and attitudes essential for the delivery of excellent patient care. ABIM is the largest medical specialty board in the United States and certifies one out of every four practicing physicians.

After initial certification, ABIM requires physicians to maintain their knowledge and skills. One way physicians can do this is through feedback from patients. The challenge is to develop questionnaires that capture important information, which then can be acted upon by physicians.

The ABIM used the ORE platform to refine a palliative care patient questionnaire that is used by primary care and subspecialist physicians. This isn’t a late-stage questionnaire about end-of-life care, or even hospice. It’s focused on a newer approach in healthcare called primary palliative care, which starts when a patient is first diagnosed with what could be a life-limiting condition. Discussions between physicians and patients at this stage begin by establishing goals of care well before the patient becomes seriously ill. Symptom management throughout the course of disease also is an essential component of care.

The team’s goal is to have internists and subspecialists (cardiologists, nephrologists, pulmonologists, etc.) use the questionnaire to become more aware of what to discuss with patients who have serious illnesses and how to document these discussions. Since these patients can live a long time with disease, conversations about everything from their preferences for care, life goals, and even how much information they want about their condition, are critical from the start.

“ORE’s advantage is its link to PatientsLikeMe, which has an established community of patients with multiple conditions and extensive data about symptoms, treatments, and quality of life. With ORE we’ll be able to reach beyond our own borders and directly test our questions with a completely new audience.”

- Dr. Ravaud

Dr. Phillippe Ravaud, MD, MSc, PhD Pilot ORE Researcher

Dr. Thi Tranviet, MD and PhD candidate, Pilot ORE Researcher

METHODS Research Team

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The number of patients with multiple chronic diseases is on the rise, and so is the complexity of their care. Today, these patients have a lot to manage, everything from lifestyle changes to a myriad of doctor visits and a daunting range of medications. How patients manage it all has a huge impact on their health.

The doctors who care for these patients are challenged, too. They often follow specific guidelines for specific diseases, but have less experience adding everything together to be able to tell patients which steps are the most critical to follow. In such complex situations, doctors may not ask the right questions to understand if patients are on track, or overwhelmed.

Dr. Tranviet and Dr. Ravaud, part of the METHODS research team in Paris, used the ORE platform to develop a new burden of treatment questionnaire for patients with multiple chronic conditions. They developed the first such instrument in France, where it is used today to gather information from patients about their medications, care when travelling, self and physician-assisted health monitoring, exercise and diet. On the ORE platform they adapted the questionnaire for patients in English speaking countries. Theirs is now the first multinational and multilingual treatment burden questionnaire for patients with multiple chronic conditions.

A paper on the project was published in BMC Medicine, and the project has been covered by the press, notably Boston’s WGBH public radio station.

Instruments developed in ORE:

Burden of Treatment