On September 28, PIPC hosted the 2nd annual forum on “Achieving Patient-Centeredness in CER” to discuss the progress made towards patient-centered CER and the challenges for the future.
PIPC Chairman Tony Coelho opened the event by complimenting the good work and important steps the Patient-Centered Outcomes Research Institute (PCORI) has taken over the past year; he praised the board for their transparency and their efforts to engage the public on CER.
PIPC was grateful to have PCORI’s executive director, Dr. Joe Selby, give the keynote remarks. Selby stressed that PCORI is extremely focused on ensuring that patients are the center of CER. He stated that that PCORI would not allow CER to be used for cost analysis and that PCORI would do its job in keeping CER patient centered. He stated that PCORI is unique in that it is committed to conducting research that is guided by patients, caregivers, and the broader health community, and that it is important for PCORI to work with groups like PIPC to maintain the goal of achieving better patient care.
After Dr. Selby’s keynote, panelists Shawn Bishop, Marc Boutin and Dr. Allen Taylor discussed how CER was outlined in the law, what it means to patient groups and how it is currently being used in clinical trials. Shawn Bishop gave great insight into her experience as the Senate Finance Committee health advisor and her position in helping to draft the legislation that eventually called for the creation of a PCORI Board. Marc Boutin provided a great distinction between patients, patient groups and patient advocates, which was very well received by the patient advocates in the crowd. Dr. Taylor provided real life examples of CER from his clinical research that provided great perspective.
The discussion between the panelists helped show where various stakeholder groups are on this important issue and provided an open platform for patient groups to engage in the conversation. Based on the comments, it was clear that all of the groups had the same goal of keeping CER focused on the needs of the patient. The information that CER provides doctors about the effectiveness of new tests and treatments truly can help them make better treatment decisions for their patients.
We hope this forum was as insightful to our attendees as it was to us.
PIPC Chairman Tony Coelho opened the event by complimenting the good work and important steps the Patient-Centered Outcomes Research Institute (PCORI) has taken over the past year; he praised the board for their transparency and their efforts to engage the public on CER.
PIPC was grateful to have PCORI’s executive director, Dr. Joe Selby, give the keynote remarks. Selby stressed that PCORI is extremely focused on ensuring that patients are the center of CER. He stated that that PCORI would not allow CER to be used for cost analysis and that PCORI would do its job in keeping CER patient centered. He stated that PCORI is unique in that it is committed to conducting research that is guided by patients, caregivers, and the broader health community, and that it is important for PCORI to work with groups like PIPC to maintain the goal of achieving better patient care.
After Dr. Selby’s keynote, panelists Shawn Bishop, Marc Boutin and Dr. Allen Taylor discussed how CER was outlined in the law, what it means to patient groups and how it is currently being used in clinical trials. Shawn Bishop gave great insight into her experience as the Senate Finance Committee health advisor and her position in helping to draft the legislation that eventually called for the creation of a PCORI Board. Marc Boutin provided a great distinction between patients, patient groups and patient advocates, which was very well received by the patient advocates in the crowd. Dr. Taylor provided real life examples of CER from his clinical research that provided great perspective.
The discussion between the panelists helped show where various stakeholder groups are on this important issue and provided an open platform for patient groups to engage in the conversation. Based on the comments, it was clear that all of the groups had the same goal of keeping CER focused on the needs of the patient. The information that CER provides doctors about the effectiveness of new tests and treatments truly can help them make better treatment decisions for their patients.
We hope this forum was as insightful to our attendees as it was to us.
Differentiating Patients, Consumers, and Patient Advocacy Organizations
When conducting Comparative Effectiveness Research it is crucial to understand the differences between the players involved in the process. In his remarks at the 2nd Annual Forum on Achieving Patient centeredness , Marc Boutin, executive vice president and COO at the National Health Council, discussed the important differences between the three major players in the process: the patient, the consumer, and the patient advocacy organization. He stated that many times when the patient is discussed they are not defined. To the National Health Council, patients are “people with chronic disease and disabilities,” and a consumer is someone who “uses the health care system when they need it, sometimes for acute care, sometimes because they have hay fever.” Each group is at different “ends of the spectrum,” representing very different perspectives.
According to Boutin, one of the most important differences is between the information that both groups are looking for when it comes to health care options. At times, the consumer looks for the most cost effective option; whereas, the patient looks for the best and most effective treatment. As a result, differentiating the two and keeping the focus on the patient is critical for the success of CER.
Boutin further delved into the subject, by differentiating between the patient and patient groups. Boutin stressed that patients are “looking at a snapshot of where they are as it relates to their condition” and patient organizations do not “look at the snapshot of a condition as it exists at any given point in time. They look at the life cycle of that condition. They look at it from the beginning to the end, from early diagnosis, actually even a step back from prevention to diagnosis to treatment, on to death.” It is important to see this difference because the patient’s unique perspective is what is necessary in order for the patient organizations to create a general or “holistic” view of the disease and its treatment patterns.
The greatest take from Boutin’s remarks is that people involved in the CER process must understand the differences between patients, consumers and patient advocacy groups. A proper understanding can help to facilitate the proper synthesis between the groups and ultimately help CER remain as focused on the patient as possible.
According to Boutin, one of the most important differences is between the information that both groups are looking for when it comes to health care options. At times, the consumer looks for the most cost effective option; whereas, the patient looks for the best and most effective treatment. As a result, differentiating the two and keeping the focus on the patient is critical for the success of CER.
Boutin further delved into the subject, by differentiating between the patient and patient groups. Boutin stressed that patients are “looking at a snapshot of where they are as it relates to their condition” and patient organizations do not “look at the snapshot of a condition as it exists at any given point in time. They look at the life cycle of that condition. They look at it from the beginning to the end, from early diagnosis, actually even a step back from prevention to diagnosis to treatment, on to death.” It is important to see this difference because the patient’s unique perspective is what is necessary in order for the patient organizations to create a general or “holistic” view of the disease and its treatment patterns.
The greatest take from Boutin’s remarks is that people involved in the CER process must understand the differences between patients, consumers and patient advocacy groups. A proper understanding can help to facilitate the proper synthesis between the groups and ultimately help CER remain as focused on the patient as possible.
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