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Special Edition Required Reading: Turning the Tide Against Cancer 2014 National Conference

November 7, 2014

Great stories are published daily about the impact personalized medicine is having on individual patients, and the medical community as a whole, but it can be a challenge to stay on top of the news. With that in mind, we bring to you a monthly roundup of the three to five most thought-provoking articles we are reading, sharing and discussing with our colleagues.

This is a special installment of Required Reading reporting on coverage of the Turning the Tide Against Cancer 2014 national conference, which was held on October 9 in Washington, D.C. The following articles focus on the passionate and engaging discussion that took place at the conference, delving into the importance of moving towards a more high-value, patient-centric system of cancer care that helps to improve patient outcomes and represents each individual’s unique needs and definition of “value.”


Through Len’s Lens: Putting a Price on Value by J. Leonard Lichtenfeld, M.D., MACP, MedPage Today

Cancer Community Turns Focus to ‘Value’ by Alicia Ault, OncologyPractice.com

‘Turning the Tide’ Working Group Issues Recommendations on Patient-Centered, Value-Based Cancer Care  by Peggy Eastman, Oncology Times

Turning The Tide Against Cancer: A Discussion on Value by Amy O’Connor, PACE USA Blog

ASCO’s Tool for Scoring Cancer Drug Value to be Released in Early 2015 by Cathy Kelly, The Pink Sheet Daily (Subscription Required)

The Pharmaceutical Research and Manufacturers of America’s (PhRMA) Conversations blog also featured a video series with several speakers from the Turning the Tide Against Cancer 2014 national conference to get their thoughts on scientific advances in cancer treatments. The full set of responses can be viewed below.


Newton F. Crenshaw, Vice President, North American Oncology Commercial Operations, Global Business Development and Advocacy, Eli Lilly and Company


Linda House, R.N., B.S.N., M.S.M., Executive Vice President, External Affairs, Cancer Support Community


J. Leonard Lichtenfeld, M.D., MACP, Deputy Chief Medical Officer, American Cancer Society


Stephen L. Eck, M.D., Ph.D., Vice President, Global Head of Oncology Medical Sciences, Astellas Pharma Global Development


Roy S. Herbst, M.D., Ph.D., Ensign Professor of Medicine, Professor of Pharmacology, Chief of Medical Oncology, Director of the Thoracic Oncology Research Program, and Associate Director for Translational Research, Yale Comprehensive Cancer Center and Yale School of Medicine

To follow the news on the Turning the Tide Against Cancer initiative, visit the News page.

A Patient-Centered Perspective on Cancer Research and Care

October 15, 2014
Shelley Fuld Nasso, CEO, National Coalition for Cancer Survivorship, addressing the role of payment reforms in supporting innovative cancer care at the Turning the Tide Against Cancer 2014 national conference (Photo: Liz Roll)

Shelley Fuld Nasso, M.P.P., CEO, National Coalition for Cancer Survivorship, addressing the role of payment reforms in supporting innovative cancer care at the Turning the Tide Against Cancer 2014 national conference (Photo: Liz Roll)

A key theme at the Turning the Tide Against Cancer national conference was the need for a patient-centered approach to cancer care. Shelley Fuld Nasso, M.P.P., CEO, National Coalition for Cancer Survivorship (NCCS), shared her thoughts on the importance of patient education, shared decision-making, and aligning a treatment plan with the goals and priorities of the patient.

Read more about Shelley’s thoughts on incentive structures that encourage innovation, as well her personal experience with cancer, and the urgent need to push discovery to help save lives on the NCCS blog.

Turning the Tide Against Cancer: Collaboration to Improve Outcomes

October 6, 2014

Over the past few weeks, the Age of Personalized Medicine editorial team has been talking to leaders from the co-convening organizations of the second Turning the Tide Against Cancer Through Sustain Medical Innovation national conference, which will be held on October 9, 2014, in Washington, D.C.

Our conversation with Margaret Foti, Ph.D., M.D. (h.c.), chief executive officer of the American Association for Cancer Research, on the need for continued collaboration across the diverse spectrum of stakeholders in the cancer community, can be viewed below.

We also heard from Edward Abrahams Ph.D., president of the Personalized Medicine Coalition and Marcia A. Kean, M.B.A., chairman of Feinstein Kean Healthcare, on the need for policies that encourage and keep pace with innovation in cancer research and personalized medicine.

Visit the Turning the Tide Against Cancer website to register for the conference and learn more about ways you or your organization can support the ongoing initiative. If you are unable to attend the conference in person, please join us via webcast on October 9 by visiting the Turning the Tide Against Cancer homepage. The Age of Personalized Medicine will also be tweeting live from the conference using #T3cancer.

Q&A with Suleika Jaouad, The New York Times Emmy® Award Winning Columnist, “Life, Interrupted,” and Cancer Survivor

October 2, 2014

In advance of the Turning the Tide Against Cancer 2014 national conference, the Age of Personalized Medicine editorial team posed questions to Suleika Jaouad, The New York Times Emmy® Award winning columnist of “Life, Interrupted,” and cancer survivor, who will be speaking at the event on October 9 in Washington, D.C. Below, Suleika shares insights from the patient perspective on the need for a patient-centered approach to cancer care.

QUESTION: As a cancer patient, would you describe your health care experience as “patient-centered”? Why or why not?

Suleika Jaouad: Yes and no. I feel deeply grateful and indebted to my doctors who have always gone above and beyond to provide me with the very best care, but the lack of patient-clinician communication has been an ongoing struggle and source of frustration for me. For example, just a few days after my diagnosis, I learned via Google search that the chemotherapy treatments I was scheduled to undergo in less than a week would most likely leave me infertile. It was only after I initiated a conversation about fertility that my doctors told me about the available options. This felt like a major breach of trust early on in my treatment and I couldn’t help but wonder what else my doctors weren’t telling me. At 22, I hadn’t had the chance to start a family yet. Preserving my ability to be a mother one day felt like a lifeline to an already uncertain future. After explaining this to my medical team, they agreed to delay chemotherapy so that I could undergo fertility preservation treatments. This experience was the first of many that made me realize I needed to take an active role in my medical care in order to better advocate for myself.

QUESTION: In your opinion, how can we create a more patient-centered approach to cancer research and care?

Suleika Jaouad: Communication is the golden ticket. We live in the WebMD age where patients often consult Google before they consult a doctor. This can be dangerous and can lead to misinformation and misunderstandings. Creating an environment where the patient feels comfortable asking questions and talking to their medical team is crucial. It’s also very important for clinicians to educate their patients and to take the time to explain things more than once in clear, simple language. My doctors are some of the smartest people I’ve ever met. This made me feel safe and like I was in good hands, but half of the time I felt lost in the conversation. A lot of the terminology and medical jargon they used sounded like a foreign language to me. I wanted to understand and learn more about my disease but I often felt overwhelmed and didn’t know where to start.


Visit the Turning the Tide Against Cancer website to register for the conference and learn more about ways you or your organization can support the ongoing initiative. The Age of Personalized Medicine will also be tweeting live from the conference on October 9. Join the conversation with #T3cancer.

Turning the Tide Against Cancer: Policies to Sustain Innovation

October 1, 2014

Leading up to the second Turning the Tide Against Cancer Through Sustain Medical Innovation national conference on October 9, 2014, in Washington, D.C., the Age of Personalized Medicine editorial team had the chance to sit down with leaders from the initiative’s co-convening organizations to talk about the current cancer research and care landscape, what progress has been made since the start of the initiative, and the upcoming conference.

Last week, we heard from Edward Abrahams Ph.D., president of the Personalized Medicine Coalition on the importance of patient-centered care and value, and the need for policies that encourage innovation in cancer research and personalized medicine in order to improve patient outcomes.

Our conversation with Marcia A. Kean, M.B.A., chairman of Feinstein Kean Healthcare, on the importance of enacting policies that keep pace with the rapid development of innovative cancer treatments, can be viewed below. Stay tuned for our video interview with Margaret Foti, Ph.D., M.D. (h.c.), chief executive officer of the American Association for Cancer Research.

Visit the Turning the Tide Against Cancer website to register for the conference and learn more about ways you or your organization can support the ongoing initiative. The Age of Personalized Medicine will also be tweeting live from the conference on October 9 using #T3cancer.

A Preview of the Turning the Tide Against Cancer National Conference – Part 2

September 30, 2014

Leading up to the Turning the Tide Against Cancer 2014 national conference, the Age of Personalized Medicine editorial team posed two questions to leaders in the cancer community who will be speaking at the event on October 9 in Washington, D.C. In part one, we asked speakers to share their insights on the role of innovation in advancing cancer research and care. The second question focused on the shift to patient-centered research and care, and how patient-centric approaches can improve healthcare.

QUESTION: What does having a patient-centered healthcare system mean, and why it is important for the healthcare system as a whole?

Here’s what some of the conference speakers had to say:

 

Patricia GoldsmithPatricia J. Goldsmith, CEO, CancerCare

“Consistent with the IOM definition, patient-centered care is respectful of and responsive to the individual patient’s preferences, needs and values. The days when clinicians make all of the decisions are over. Now that the consumer movement has reached healthcare, patients are becoming empowered to partner with their physicians to get the treatment they believe is best for them. The balance of power is shifting so that decision-making is shared. Within this environment, patients can fully engage in the process of developing and managing their own treatment. This is important because we know that engaged patients have better outcomes, higher levels of satisfaction with their health care, and consume fewer clinical resources.”

 

Tanisha CarinoTanisha V. Carino, Ph.D., Executive Vice President, Avalere Health

“In order to strive for a more patient-centered approach to cancer care, it is important to consider how patients are engaged in defining healthcare priorities, including identifying areas of unmet need and the types of study designs that best reflect the risks and tradeoffs they experience in care practice. Sustained medical innovation plays a central role in meeting these constantly evolving patient needs, which are particularly complex for cancer patients. Moreover, patients are now bearing much more financial responsibility for their care than in the past. The majority of exchange enrollees chose plans in the Silver metal level, which come with average deductibles up to $2,260 and maximum out-of-pocket costs reaching up to $6,350 for in-network care, according to Avalere PlanScape™ analysis. With increased financial accountability, patients, along with their caregivers, are increasingly engaged in making choices regarding the most appropriate treatment. Payment mechanisms for cancer care and new insurance products will need to keep pace with both medical advances and the financial realities facing patients and their caregivers.”

 

abernethyAmy P. Abernethy, M.D., Ph.D., Professor of Medicine, Duke University School of Medicine; Chief Medical Officer and Senior Vice President of Oncology, Flatiron Health, Inc.

“Cancer care isn’t about cancer and cancer care isn’t about health systems.  Nor is it about research or researchers. It’s about real people who are touched by, afflicted with, and hopefully live way beyond the experience of cancer.  So fundamentally, we need to build our medical innovations with the patient in mind.  For this reason, I’ve always thought we have to have the patient at the center of our data story – where data from one patient tells a longitudinal story across a life and then it’s the data of many patients that are aggregated together to form our foundational data set to support innovation.  Similarly, patients need to be the cornerstones of our clinical trials and basic research – our muse.”

 

Crenshaw PhotoNewton F. Crenshaw, Vice President, North American Oncology Commercial Operations, Global Business Development and Advocacy, Eli Lilly and Company

“Patient-centered care means exactly that: treatment choices and care that reflect the preferences, needs, and values of someone with cancer, for whom each treatment decision has a profound implication on health and quality of life. Every patient’s experience is unique: for some people, progress means a better prognosis and more time spent with their families; others prioritize treatment that has fewer side effects or is easier to administer. Ultimately, patient-centered care respects these differences and prioritizes the values of each individual person.”

 

Coehlo Photo2Tony Coelho, Former Member, U.S. House of Representatives; Chairman, Partnership to Improve Patient Care

“Personalized and patient-centered cancer care will improve health outcomes by identifying the treatments that work best for individual patients, improving outcomes by avoiding trial and error medicine. To further support patient-centered care, policies must not limit access or push ‘one-size-fits-all’ treatment solutions. Patient-centeredness consists of a series of principles focused on patient engagement, patient activation, access to a range of treatments, and shared decision-making. Patient-centered principles must be incorporated into the early phases of evidence development, translation and implementation, as well as in the design and implementation of new payment and delivery reform models for cancer care.”


Visit the Turning the Tide Against Cancer website to register for the conference and learn more about ways you or your organization can support the ongoing initiative. The Age of Personalized Medicine will also be tweeting live from the conference on October 9. Join the conversation with #T3cancer.

A Preview of the Turning the Tide Against Cancer National Conference – Part 1

September 29, 2014

Leading up to the Turning the Tide Against Cancer 2014 national conference, the Age of Personalized Medicine editorial team posed two questions to leaders in the cancer community who will be speaking at the event on October 9 in Washington, D.C. In part one, we asked speakers to share their insights on the role of innovation in advancing cancer research and care. Check back for part two where we ask leaders to define patient-centered and explain how patient-centric approaches can improve healthcare.

QUESTION: What role does medical innovation play in paving the pathway to progress towards a sustainable and high-value, patient-centric cancer care system?

Here’s what some of the conference speakers had to say:

………………

abernethy

Amy P. Abernethy, M.D., Ph.D., Professor of Medicine, Duke University School of Medicine; Chief Medical Officer and Senior Vice President of Oncology, Flatiron Health, Inc.

“One area of important medical innovation is the generation and use of data. This is not just hype around ‘big data’ but the recognition that we need amalgamation of data streams that tell the whole person’s story. This includes information about the cancer itself, and also the individual’s personal life: their values and needs, their personal experiences, as well as biometric monitoring. The longitudinal story expressed through data can then be used to support many innovations in cancer care. It can act as a clinical annotation stream to inform biological research such as annotation of biospecimens, biomarkers and basic discovery. It can be used to optimize cancer care delivery, or used for quality monitoring and to highlight gaps in care to be resolved. It can be used to compare differing interventions to figure out what works for whom and when. Advancing high quality and sustainable medical care is dependent on innovations around the generation and use of data.”

………………

Newton F. Crenshaw, Vice President, North American Oncology Commercial Operations, Global Business Development  and Advocacy, Eli Lilly and Company

Newton F. Crenshaw, Vice President, North American Oncology Commercial Operations, Global Business Development and Advocacy, Eli Lilly and Company

“Medical innovation is absolutely central to advancing the fight against the over 200 types of cancer. Each new advance, no matter how small, contributes to our scientific understanding of this collection of diseases, and provides new hope and cures to people with cancer. This cycle of continuous innovation has had impressive results and generated savings throughout the health care system: since 1975, the 5-year survival rate for cancer patients has increased by about 40%. To sustain–and accelerate–this progress, our society must continue to foster and reward innovation.”

………………

Coehlo Photo2Tony Coelho, Former Member, U.S. House of Representatives; Chairman, Partnership to Improve Patient Care

“The rapid pace of medical innovation in oncology is increasing our ability to provide more personalized, patient-centered care (based on their biomarkers, quality of life considerations, etc.). Achieving more efficient delivery of high quality care will require continued medical innovation, including development of new treatments, improvements to existing treatments, and increasing efficiencies in the delivery system that support higher quality care and an overall a reduction in the economic and health burden of disease. But innovation is worthless without access to it.”


Visit the Turning the Tide Against Cancer website to register for the conference and learn more about ways you or your organization can support the ongoing initiative. The Age of Personalized Medicine will also be tweeting live from the conference on October 9. Join the conversation with #T3cancer.

Required Reading: September 2014

September 26, 2014

Great stories are published daily about the impact personalized medicine is having on individual patients, and the medical community as a whole, but it can be a challenge to stay on top of the news. With that in mind, we bring to you a monthly roundup of the three to five most thought-provoking articles we are reading, sharing and discussing with our colleagues.

This is the September 2014 installment of Required Reading.


Medical Calculators Use Big Data to Help Patients Make Choices by Laura Landro, The Wall Street Journal

Michael Kattan, chairman of the department of quantitative health sciences at Cleveland Clinic’s Lerner Research Institute, discusses sophisticated risk calculators, or “nomograms,” that can combine a patient’s unique characteristics, such as age, gender, race, extent and type of disease and other health factors; compare them with the vast databases of similar cases and studies; and use them to predict probable outcomes depending on the treatment a patient chooses.

FDA’s Shuren Defends Plan to Issue Guidance for LDTs at House Hearing by Michael D. Williamson, Bloomberg BNA

On September 9, the House Energy and Commerce Committee’s Subcommittee on Health held a hearing to examine the regulation of laboratory developed tests (LDTs) as a continuation of the committee’s 21st Century Cures initiative. Members heard testimonies from various witnesses on recently released guidance from the U.S. Food and Drug Administration (FDA) and its impact on innovation and the practice of precision medicine. Read more about the FDA’s proposed framework for regulating LDTs.

Experts Warn US in Danger of Losing Biotechnology Edge by Chris Casey, Medical Xpress

The United States is in potential danger of losing its biomedical edge to countries that are aggressively funding research into personalized medicine, according to discussion that emerged at the 21st Century Cures Roundtable on September 5. Roundtable panelists noted that biotechnology is at a crossroads in America, and that funding levels for research have flattened in recent years.

Researcher Urges Wider Genetic Screening for Breast Cancer by Rob Stein, NPR Shots Blog

Mary-Claire King, the geneticist who identified the first breast cancer gene, is recommending that all women get tested for genetic mutations that can cause breast cancer, regardless of their personal or family history. According to a paper she recently published in Proceedings of the National Academy of Science, women who carry mutations in BRCA1 or BRCA2, but have no family history of breast or ovarian cancer, have the same high risks of developing either cancer as those who are identified to be at-risk by virtue of their family history.

Turning the Tide Against Cancer: Patient-Centered Care and Value

September 24, 2014

On October 9, the Personalized Medicine Coalition, the American Association for Cancer Research, and Feinstein Kean Healthcare will be convening the second Turning the Tide Against Cancer Through Sustained Medical Innovation national conference in Washington, D.C., to continue the ongoing dialogue which began at the initiative’s inaugural conference in June 2012.

This year’s conference will bring together leaders from across the cancer community to help identify specific policy solutions to the challenges of supporting the shift to patient-centered research and care and addressing the value and cost of cancer care — two key themes that have emerged through the initiative’s ongoing work.

The Age of Personalized Medicine editorial team sat down with each of the initiative co-conveners to talk about the current cancer research and care landscape,  the upcoming conference, and what progress has been made since the start of the Turning the Tide Against Cancer initiative in 2011.

Our conversation with Edward Abrahams Ph.D., president of the Personalized Medicine Coalition can be viewed below. Stay tuned for additional video interviews with Margaret Foti, Ph.D., M.D. (h.c.), chief executive officer of the American Association for Cancer Research and Marcia A. Kean, M.B.A., chairman of Feinstein Kean Healthcare.

Visit the Turning the Tide Against Cancer website to register for the conference and learn more about ways you or your organization can support the ongoing initiative. The Age of Personalized Medicine will also be tweeting live from the conference on October 9.

Required Reading: August 2014

August 28, 2014

Great stories are published daily about the impact personalized medicine is having on individual patients, and the medical community as a whole, but it can be a challenge to stay on top of the news. With that in mind, we bring to you a monthly roundup of the three to five most thought-provoking articles we are reading, sharing and discussing with our colleagues.

This is the August 2014 installment of Required Reading.


The Price of Personalization by Timothy Gower, Proto Magazine

This article explores the growing debate over the cost and value of personalized medicines and identifies ways that the healthcare system may need to adapt to accommodate the development and use of increasingly more targeted therapies that work for smaller patient populations.

FDA to Regulate Thousands Of Cancer, Genetic, and Other Diagnostics by Matthew Herper, Forbes

Earlier this month, the U.S. Food and Drug Administration (FDA) announced plans to regulate laboratory developed tests, many of which are diagnostics developed as result of the exploding field of genetics. The new regulatory framework proposes that any test used to diagnose a disease or to decide on a course of treatment will need to be cleared by FDA before it can be utilized.

It’s Time for Us to Think About Cancer Differently by Paul Mejia, Newsweek

A recent genomic study published in the journal Cell suggests that 1 in 10 cancer patients could be more accurately diagnosed if cancer were defined by molecular and genetic characteristics, rather than by where it is located. Researchers believe that reclassifying cancer by identifying the type of cell that caused the disease, instead of the tissue type, could ultimately lead to better treatment in the future.

RNA Combination Therapy for Lung Cancer Offers Promise for Personalized Medicine by Kevin Leonardi, MIT News

Early research at the Koch Institute for Integrative Cancer Research at MIT offers promise for personalized cancer treatments using RNA combination therapies to improve therapeutic response. The development of an efficient delivery system of individual or combined small RNAs to solid tumors could help regulate genetic mutations underlying a given patient’s cancer.


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