Author Archives: Real World Health Care Editorial Staff

Can Psychosocial Care Increase the Value of Cancer Care?

This week, Real World Health Care interviews Suzanne M. Miller, PhD, Professor of Cancer Prevention and Control and Director of Patient Empowerment and Health Decision Making at Fox Chase Cancer Center (FCCC). Dr. Miller , is on the Board of Directors of the HealthWell Foundation and the Society of Behavioral Medicine (SBM), and serves as Chair of the Board of Directors of the New Jersey Health Care Quality Institute. She also serves as Editor-in-Chief for SBM’s flagship journal Translation Behavioral Medicine: Practice, Policy and Research.

At FCCC, Dr. Miller’s work focuses on developing, evaluating and implementing psychosocial interventions that can be readily integrated in ongoing cancer care to improve outcomes for patients and their families, especially those outcomes related to patient-centered experiences of their cancer diagnosis. FCCC’s goal is to integrate understanding of the psychological response and negative psychological consequences of a cancer diagnosis with a broader medical management of the patient, and thereby achieve optimal patient-reported outcomes.

We discussed the work of SBM and explored the link between cancer and behavioral health. We also talked about behavioral health screening and the importance of integrated care.

Advocating for Psychosocial Care 

Real World Health Care: How does the Society for Behavioral Medicine address the issue of psychosocial care for cancer patients?

Dr. Suzanne Miller, Fox Chase Cancer Center

Suzanne Miller: SBM advocates for NIH research funding so members and others working in cancer have the dollars they need to discover and scale new behavioral treatments and care approaches. SBM also shares the latest cancer care research with members through our journals and annual scientific conference. This gives them the best information for planning new studies and for helping patients in their clinics.

Our flagship journal, Translational Behavioral Medicine, publishes studies showing how successful behavioral treatments can move from the lab to the clinic where they can help real patients. The journal’s February 2018 issue highlights the use of genomic information in cancer care and in screening cancer patients’ family members.

Other papers published in 2017 feature best practices for encouraging more colon cancer screening and for helping breast cancer patients cope with diagnosis and survival. This recent research by Allicock, et.al. (2017) investigated the drivers of successful implementation of a peer-support program in rural cancer patient populations. It identified possible barriers to the effectiveness of similar community-engaged programs in improving survivorship outcomes.

Several SBM members are at the forefront of successfully training providers to deliver existing empirically supported interventions to patients as well as shifting interventions to user-driven, mobile-friendly, web-based platforms to widen reach in treating anxiety and depressive disorders in cancer patients.

Link Between Cancer and Behavioral Health

RWHC: What are some of the most common behavioral health problems associated with having cancer?

SM: A cancer diagnosis brings a wealth of psychological challenges. In fact, adults living with cancer have a six-time higher risk for psychological disability than those not living with cancer. Patients and families have to deal with not only the physical stress to their lives and potential livelihoods, but also with family dynamics and changes in their sense of self and future.

Cancer patients also must make numerous decisions while they are in an extremely emotional state. They must decide what treatments to pursue, both initially and over the long term, how to cope with treatment side effects, how to deal with disability and maintain an independent identity, and how to maintain quality of life.

Depression and anxiety are common diagnoses associated with these challenges, yet, despite all of this, social or emotional support is offered in less than half of cancer patients’ care. If cancer patients have certain behavioral health conditions and they are not treated for them, it can negatively impact health outcomes by affecting their ability to make sound medical decisions, by decreasing the chances of them seeking and adhering to treatment, and by affecting their immune systems and ability to fight off cancer. Behavioral health issues can also contribute to harmful health behaviors such as smoking. Adults with depression are more likely to smoke heavily and less likely to quit smoking. Smoking is not only linked to cancer incidence but is also associated with a higher burden of side effects reported by cancer patients during treatment and in survivorship.

RWHC: Can behavioral health problems exacerbate physical or biological problems in cancer patients?

SM: Yes, in a number of ways. They interfere with rational decision-making about one’s treatment and one’s life choices. They also undermine adherence to needed regimes, especially over time. For example, after a breast cancer diagnosis, most patients undergo recommended surgery. However, following surgery, many patients are advised to go on hormonal regimes that can be toxic and difficult to endure. Depression and anxiety can undermine adherence to those regimens.

At a physiological level, healing can be delayed or impaired, making patients less likely to reenter society and more likely to experience relapse and recurrences. For example, cellular and molecular processes can be negatively influenced by untreated behavioral disorders in cancer patients, which can lead to the cancer’s progression. Importantly, this connection can also work conversely, meaning psychological treatment has been found to improve underlying biological status. A compelling example of this was shown by Thornton, et.al., (2009) who used a psychological intervention to alleviate symptoms of depression among cancer patients and reduce the presence of inflammatory markers found in the body. This is important because inflammatory markers are an indicator of the stress that is being placed on a person’s immune system. Since mental health issues are also associated with smoking and other unhealthy behaviors, behavioral health problems appear to contribute to worse health outcomes for cancer patients and survivors.

Attention and Support

RWHC: Do you think behavioral health impacts of having cancer get enough attention from the provider community?

SM: The provider community is well aware of and sympathetic to the kinds of challenges patients face. However, they often lack the time and expertise needed to sufficiently screen for depression and anxiety and related psychological issues. This serves as a barrier for provider compliance with recommendations that patients with behavioral health problems receive evidence-based psychological treatment. Further, there is a lack of available costs and infrastructure to pay for appropriate psychosocial interventions. All of this amounts to only 14% of cancer patients receiving behavioral health counseling. Therefore, we are faced with behavioral health issues like depression, which is common in cancer patients and is known to negatively influence cancer outcomes, which are not being addressed sufficiently in the current standard of care.

RWHC: Are there any stigmas attached to this from the patient’s perspective?

SM: Cancer has been the big “C” from the time people became aware of it. More than any other disease, patients fear it and suffer tremendous concerns about the social impact for them and their families when people learn that they have a cancer diagnosis. Further, cancer doesn’t go away. Survivorship and late effects last well after the initial diagnosis, even for early stage cancers. In fact, for a third of cancer patients, distress persists more than a year after their cancer diagnosis and comes in the forms of worrying about the future, feeling lonely or isolated, and financial concerns—to name a few. In addition, there is a very real insurance threat to the individual from having a so-called “pre-existing” condition such as cancer.

RWHC: Who are the best people to advocate for a cancer patient’s behavioral health? What happens when a patient doesn’t have a strong support network?

SM: I believe a well-coordinated health care team, combined with patient and community resources, is the best way to advocate for behavioral health. Each one brings a particular expertise that can speak not only to the public, but also to policy makers. At the patient level, patients need strong support from their families, peers, work, and their health care providers. Among the health care team, mental health providers are especially well-equipped to advocate for patients’ behavioral health needs. At the broader level, the system must consider psychosocial intervention as integral to patient care as a medical intervention. In fact, the two are synergistic, and we must be bold in the serving of the relevance of behavioral health in the overall health of patients diagnosed with cancer.

Behavioral Health Screening

RWHC: What sort of challenges need to be overcome to make a case for the value of psychosocial care for cancer patients?

SM: It is extremely important to show the viability of screening for cancer distress in a cost-effective manner, especially when using information technology (IT) that can help relieve the burden on the health care system. That is exactly why the National Cancer Institute is looking to fund projects that use IT to support the systematic screening and treatment of depression in cancer patients. In addition, it’s very important to show the value of psychosocial care in terms of its impact not only on psychosocial outcomes like depression and anxiety, but also on improving adherence, reducing readmission rates, improving survival rates, and reducing recurrence rates.

Value is defined as health outcomes achieved per dollar spent, so if psychosocial care can improve adherence and survival rates while also decreasing readmission and recurrence, then it can certainly be argued that psychosocial care will increase the value of health care provided.

The Whole Patient

RWHC: How can improving the integration of care and caring for the “whole patient” help to improve behavioral health among cancer patients?

SM: Cancer patients face reality-based anxiety and depression, stigma, changes in self and family identity, and a more frightening and uncertain world. When the health care system limits care to medical interventions, it not only makes the impact of those interventions less effective, but it also fails to recognize the impact of psychosocial influences on cancer prognosis and survivorship.

While some patients may find their way in psychological or social support interventions, if these interventions are not well-integrated within the context of the medical care model, they limit their impact and their validation. This means that patients will be much less likely to have access to, and to uptake, critical psychological resources that can not only improve quality of life, but the quantity of life as well. An integration of care ensures that patients get access to these resources and that no patients are lost to follow-up when it comes to behavioral health care. It provides the patient with a team of support that tackles the physical, social, and emotional challenges that come with a cancer diagnosis.

A Message from Our Sponsor

As the founding sponsor of Real World Health Care, the HealthWell Foundation is committed to helping patients get the medical treatments they need, regardless of their ability to pay. We’ve seen first-hand how financial distress can impact the health and lives of individuals and families. Cancer patients with behavioral health conditions are particularly hard hit; according to the American Society of Clinical Oncology (ASCO), patients with some forms of cancer incur $8,000 more per year in health care costs than cancer patients without behavioral health conditions.

In keeping with our mission, we are pleased to announce the introduction of a new Cancer-Related Behavioral Health Fund, specifically for treatment-related behavioral health issues in cancer. The Fund will provide financial assistance to individuals with a diagnosis of cancer to help with cost-shares (deductibles, coinsurances and copayments) for covered services rendered by behavioral health providers (psychiatrists, psychologists, clinical counselors, and licensed social workers).

We invite readers of Real World Health Care to learn more about this new Fund and how you can support it by visiting www.HealthWellFoundation.org.

 

 

Multiple Sclerosis: Overcoming Pain

In March, Real World Health Care will launch a new series focusing on the behavioral health impacts of chronic illnesses. Until then, we will revisit a few of our recent blog posts that touch briefly on related behavioral health issues. This week, we revisit our interview with Dawn Ehde, PhD, Department of Rehabilitation Medicine, University of Washington School of Medicine. Dr. Ehde serves as a clinical psychologist and professor at UW. She conducts research evaluating the efficacy of various behavioral, exercise, and pharmacological interventions for chronic pain, depression, and/or fatigue in adults with multiple sclerosis (MS) and other acquired neurological conditions.

Dr. Ehde discusses some of her recent clinical and research work on cognitive-behavioral interventions for MS-related pain.

Living with MS and Pain

Real World Health Care: In 2015, you published an article: Utilization and Patients’ Perceptions of the Effectiveness of Pain Treatments in Multiple Sclerosis. Can you summarize the key results of your study and the implications for patients with MS?

Dawn Ehde, PhD, University of Washington School of Medicine

Dawn Ehde: We conducted this survey to learn more about pain management from the perspective of people living with MS and pain. We found that people with MS and pain try a lot of different treatments to manage pain, but few treatments provide adequate pain relief.

Nonprescription medications such as nonsteroidal anti-inflammatories and physical modalities such as massage were some of the most common methods used. Many use more than one treatment to manage pain. Some of the treatments that individuals rated as most helpful, such as hypnosis, were infrequently used. In fact, we found that very few people surveyed had tried or accessed behavioral pain treatments such as training in mindfulness meditation, cognitive behavioral self-management, or self-hypnosis. This was the case even though there is good evidence that these types of treatments are beneficial to many people with chronic pain, including MS, and have few or no negative side effects. This study highlighted for me the need to improve access to these types of non-pharmacological pain management.

Integrated Care Approach

RWHC: Are you currently involved in any other research relating to pain management in MS patients?

DE: We have several studies in various stages that address pain management in MS. We recently published a study that found that an eight-session telephone-delivered self-management intervention was effective in reducing pain (both its severity and its interference with activities) and fatigue. It also was effective in improving mood, quality of life, and resilience. The benefits were maintained at 6- and 12-month follow ups. Patient satisfaction with the treatment was high as well.

The study I am most excited about is the MS Care study, which is a comparative effectiveness trial that evaluated the benefits of an integrated care approach to pain and depression management in the clinic called “collaborative care.” The MS version, called “MS Care,” aims to improve the quality of pain care in the clinic by adding an MS Care manager to coordinate care, deliver brief behavioral treatments, initiate or adjust other medical treatments, and ensure patients do not slip through the cracks. We also offer patients the choice of getting their care management by phone or in person. Seventy-five percent chose the phone. We found that patients with chronic pain and/or depression randomly assigned to MS Care had significantly improved pain and depression symptoms, including less severe pain, less interference, less disability, and less fatigue. Additional details on the results are available at http://www.uwmscare.org/background.

Opportunities in MS Pain Research

RWHC: What are some of the biggest challenges facing researchers who are studying pain management in MS patients? How can those challenges be overcome?

DE: I actually see a lot of opportunities as an MS pain researcher. The MS community is interested in improving pain management and supporting research in this area. For example, the National MS Society has named pain as one of its research priorities. We also often find people with MS are willing participants in our research, both as participants as well as stakeholders who guide us in our research. For example, we used stakeholders to guide our MS Care study. At times, we have had to work hard to convince potential funders that pain is an issue that warrants funding and study, but that has improved in the time that I’ve been doing research. We have come a long way since I first started in this area, when pain was not always recognized as an important problem deserving attention in MS.

Challenges for MS Clinicians

RWHC: What are some of the biggest challenges facing clinicians who are treating MS patients with pain management problems?

DE: MS presents many different symptoms to manage, and thus both patients and clinicians have a lot to discuss and manage in the typical clinic appointment. One challenge is that pain management is often only one of several issues being addressed. As such, it may be difficult to fully manage a complex issue like chronic pain. I think these challenges may be overcome by rethinking how we approach and deliver pain care. We need to look at harnessing technology — including telehealth technologies — to improve care. We also need to empower patients and the MS community to recognize that pain management is something that requires active self-management and multimodal strategies.

Pain Management Therapies

RWHC: What do you see as the most promising pharmaceutical therapies for treating pain in MS patients? What are the caveats that must be understood by clinicians when prescribing such therapies?

DE: As a psychologist, I’m less able to speak to promising pharmaceutical therapies on the horizon. However, I think there are promising practices for how we deliver pain care, including medications and other rehabilitation interventions. We did manage medications in our MS Care study, and our goal within that was to promote the appropriate and effective use of pain medications and other medications that can benefit pain management, such as some of the antidepressants which have analgesic benefits. We know from our research that too often, patients get started on a treatment, perhaps at a “low dose,” and for whatever reason, they don’t have adequate follow up to adjust, intensify, or change treatment plan. In the MS Care study, we closely and quickly followed patients’ pain and adjusted treatments to optimize their benefits or switched treatments if needed. We also know that physical activity — whether it is physical therapy or encouraging physical activity — benefits people with MS and likely helps with pain management.

RWHC: Do you see a role for non-pharmaceutical pain management therapies in treating pain in patients with MS?

DE: Certainly. This is where I’ve spent most of my energy, not only because I am a psychologist, but also because many people with MS want to use non-pharmacological therapies and strategies. The people with MS I know and our stakeholders are eager to advance our understanding and use of non-pharmacological treatments such as mindfulness meditation, relaxation, and cognitive behavioral coping skills.

Partnering with Patients

RWHC: What initially got you interested in this field? What continues to inspire you?

DE: I have had family and friends with MS, and thus was drawn to learning more about MS. I started out conducting chronic pain research in people where chronic pain such as headaches was the primary problem. When I started working with patients with MS clinically, I was struck by how little we knew about MS pain management and how people with MS pain were not accessing care we knew was helpful in other pain populations.

I’ve been inspired and continue to be inspired by the people with MS whom we’ve partnered with to conduct our research. Our best research has resulted from partnering with people living with MS. They’ve also taught me a lot about resiliency. Although MS can present many challenges like pain, many people with MS and pain live full, meaningful and happy lives.

I also have been fortunate to have training grants from the National MS Society, which have allowed me to train postdoctoral fellows in MS and rehabilitation research. They represent the next generation of clinical researchers in pain and symptom management in MS.

Pain Management for Cancer Survivors

In March, Real World Health Care will launch a new series focusing on the behavioral health impacts of chronic illnesses. Until then, we will revisit a few of our recent blog posts that touch briefly on related behavioral health issues. This week, we revisit our interview with Judith A. Paice, PhD, RN, who is the lead author for the American Society of Clinical Oncology’s guideline, Management of Chronic Pain in Survivors of Adult Cancer. Dr. Paice is Research Professor of Medicine, Hematology/Oncology, at Northwestern University’s Feinberg School of Medicine and a full member of the Robert H. Lurie Comprehensive Cancer Center. Dr. Paice’s clinical work focuses on the management of cancer-related pain, and her research focuses on the study of chemotherapy-induced peripheral neuropathy. We spoke about the ASCO guideline and the need for clinicians to balance pharmaceutical and non-pharmaceutical approaches to pain management.

Real World Health Care: Why did ASCO issue a guideline for the management of pain in survivors of adult cancer?

Judith A. Paice, Feinberg School of Medicine, Northwestern University

Judith Paice: The oncology field has evolved tremendously in recent years. Not only are people living longer with cancer, but they’re being cured of their disease thanks to some fantastic treatments. These treatments provide good clinical responses, but they can also cause significant toxicity, some of which may lead to chronic pain syndromes. The goal of the guideline was to alert oncologists to the presence of these long-term, persistent pain syndromes. A secondary goal was to provide support for chronic pain syndrome treatment.

Clinician Guidance

RWHC: What are the most important take-aways for clinicians?

JP: First are ASCO’s recommendations for screening and assessment. Second are recommended treatment options, both pharmacological and, equally important, non-pharmacological treatments. The guideline also provides insights and risk mitigation strategies for clinicians around the long-term use of opioids.

Today’s oncologists are faced with a very different pain management phenomenon than they were 20 years ago, when opioids were primarily used at end of life. Opioids are now being used for patients with a much longer survival trajectory — 20 to 30 years or more. As clinicians, we need to ask if such long-term use of opioids is appropriate and safe. How do we go about determining that? The guideline helps oncologists with those types of assessments and decision making.

RWHC: What do you feel are the biggest challenges facing oncologists in managing chronic pain in cancer patients, and how is ASCO helping clinicians manage those challenges?

JP: Our society is facing a serious public health problem in the opioid abuse and misuse epidemic. As a result of this problem, we’ve seen regulations at both the state and federal level that are having a chilling effect on the availability of opioids, even for those in desperate need of these medications. ASCO has a position paper on protecting access to treatment for cancer-related pain that I encourage all clinicians to read. ASCO also advocates for better third-party reimbursement for physical therapy, occupational therapy, cognitive behavioral therapy and mental health counseling. These are crucial therapies for patients facing the “new normal” of cancer survivorship, yet most third party payers provide little or no support for these treatments. As clinicians, we need to help our patients maintain function and cope with the fact that their lives are going to be very different. For patients, it’s more than surviving cancer. It’s about finding their own inner strength in survivorship.

New Pain Management Treatments

RWHC: Where do the biggest opportunities lie for new pharmaceutical pain management treatments?

JP: Several new findings in the laboratory may lead to novel agents that do not produce opioid related adverse effects. This is promising, assuming the findings can be translated into a clinical setting. There have also been numerous compounds that proved effective in animal models of pain, but when moved into the clinical setting, they either had adverse effects that weren’t seen in animals, or they didn’t have the efficacy they presented in the lab. It is very difficult to develop a model of cancer pain in animals.

Unfortunately, there haven’t been many completely new drugs. Most of the agents approved recently are slight variations of existing compounds or an update in the delivery method: a spray instead of a tablet, for example. The industry has been more focused recently on abuse-deterrent compounds. This is a somewhat controversial area because while such formulations prevent people from crushing, snorting or injecting the drugs, they don’t keep people from taking more than what is prescribed.

Non-Pharmacologic Therapies

RWHC: What should the role be for non-pharmaceutical pain management therapies in treating cancer patients?

JP: For quite a long time, there was a tendency in medicine to rely only on pharmaceutical therapies. This made sense when patients did not have long-term survival prospects and when managing pain meant helping the patient get from their bed to a chair. Today, cancer patients are living longer. They want to get back to work and function safely without the risk of falls and other complications.

We’ve seen good data around the usefulness of physical therapy, occupational therapy and cognitive behavioral therapy for many chronic pain situations, including cancer-related pain. These non-pharmacologic therapies must go hand-in-hand with pharmaceutical therapies.

Part of the challenge with non-pharmacologic therapies is limited reimbursement. The other big challenge is getting buy-in from patients. Most of us want a quick fix. Redefining expectations can be difficult. Physical and occupational therapy can be demanding, and access to specialists who understand the special needs of those surviving cancer are in short supply. Also, there remains a stigma attached to seeing a mental health counselor. It’s important for cancer patients to know that they aren’t “weak” if they need support to help them cope with the physical and emotional challenges of being a cancer survivor. Our field needs to do a better job educating our patients about the importance of including non-pharmacologic therapies as part of our pain management repertoire.

 

 

Patient Agitation in Alzheimer’s Disease: Implications for Patients and Caregivers

In March, Real World Health Care will launch a new series focusing on the behavioral health impacts of chronic illnesses. Until then, we will revisit a few of our recent blog posts that touch briefly on related behavioral health issues. This week, we feature our interview with Anton Porsteinsson, MD, Department of Psychiatry, University of Rochester School of Medicine. Dr. Porsteinsson is the Director of the University of Rochester Alzheimer’s Disease Care, Research and Education Program and has devoted his career to the care and study of individuals with memory disorders. Following up on his recent randomized clinical trial of citalopram, we discussed why it’s important to focus on treatments for AD-related agitation — both for AD patients and their caregivers.

Real World Health Care: Why is it important to study agitation in patients with Alzheimer’s disease?

Anton Porsteinsson, MD, University of Rochester School of Medicine

Anton Porsteinsson: Agitation is quite common in people with AD. It has a huge impact on their quality of life, as well as their family members’ and caregivers’ quality of life.

RWHC: Prior to your CitAD Randomized Clinical Trial, why had previous pharmacological treatment options been deemed unsatisfactory?

AP: A number of medications have been studied over time for this condition, including atypical and conventional anti-psychotics and mood stabilizers. But the efficacy they showed, if any, was modest at best. At the same time, these medications have serious potential complications such as increases in cerebrovascular events, sedation, falls, Parkinsonism and even increased mortality.

RWHC: Your trial focused on patients receiving psychosocial intervention. Why is psychosocial intervention important for AD patients?

AP: Medications should rarely be the first line of treatment for AD patients. Not everyone needs to be treated with medications. That’s why it’s important to evaluate the root cause of the agitation problem. Is the patient agitated because of something going on in his or her environment? I remember a situation from a few years ago when I was seeing a summertime spike in agitation-related consultations from patients in a particular nursing home. It turns out the nursing home didn’t have air conditioning. So it’s not surprising patients were bothered and agitated. In AD cases, agitation may have as much to do with your roommate as your receptors.

Psychosocial intervention helps to channel nervous energy and restlessness by involving patients in something purposeful, or even giving them some sort of outlet, like an area to pace around where they are safe and not in anyone’s way.

RWHC: The trial also focused on the effects of citalopram on caregiver distress. Why is this an important area of study?

AP: Caregivers, who are often family members with little or no medical training, may not understand what is going on with their loved one. They may take the patient’s behavior personally, which can cause a great deal of stress. Even if you’re a saint, it can build up and take a lot out of you.

Providing care for someone with AD is very hard under the best of circumstances. It’s even more difficult when the patient is verbally or physically aggressive, uncooperative, or agitated. Caregivers need advice, support and tools to help them handle the situation. They need to learn to give themselves breaks, that it’s OK not to be perfect, and that help is available for them. I find that a lot of caregiver stress is alleviated when, as health care providers, we listen to them and take their concerns seriously.

Caregivers need to know that agitation in AD patients is common and that there are ways to deal with it. Providers must connect them with resources like the Alzheimer’s Association and community agencies. We need to help alleviate their concerns about finances. And we need to help them set up a working plan on how to deal with their situation — to bring order to the chaos.

RWHC: How will the results of the CitAD Randomized Clinical Trial inform your future AD research?

AP: This trial was extremely educational for the research community. It was one of the first studies to show that a medication was effective in multiple ways — both on a clinical scale in reducing agitation among patients and in reducing caregiver distress. We also found efficacy for other AD patient behaviors like anxiety, irritability and delusions or hallucinations.

On the flip side, we discovered some complications. Citalopram has been used widely for decades with vulnerable populations. But in the last five or six years, it’s been found to not be as safe as once thought. It has the traditional SSRI side-effects of mild gastrointestinal distress and mild sleep pattern disturbances. But it also has been found to have an impact on cardiac conduction, especially in higher doses. In fact, when we were about three-quarters of the way through the study, the FDA suggested that, for people older than 60, there should be a dose limit of 20mg per day.

We confirmed this finding in our study. We also saw a drug placebo difference on a cognitive measure, the MMSE (Mini Mental State Examination). It isn’t clear if this was due to baseline differences between the two groups and drift toward the mean, as the placebo group improved on the MMSE and the drug group saw a modest decline, or if it was a true modest cognitive toxicity. Until proven otherwise, we have opted to assume this is a potential side effect and we warn against it.

For our next study, we considered testing a lower dose of citalopram (20mg daily), but then we found that the active isomer of citalopram (S-citalopram) seemed to be better correlated to benefits seen in the study, while the inactive isomer (R-citalopram) more correlated with the adverse effects. S-citalopram is available as a generic drug, approved for depression and anxiety. We intend to study that drug further.

RWHC: What are some other areas of AD research you’re currently involved in within the URMC Memory Care Program? What do you see as your most promising area of research?

AP: We have a broad portfolio of research programs at URMC. We’re one of the more active academic-based clinical research programs in the country. Currently, we’re conducting two behavior-focused studies. One is ongoing and is based on positive findings on dextromethorphan hydrobromide and quinidine sulfate, with a new formulation that uses less quinidine. We’re also looking at methylphenidate for treatment of apathy in patients with AD.

We’re also investigating new imaging techniques and various biomarkers to improve our ability to identify those at risk. And, we’re working to find better ways of monitoring the progression of the disease and response to treatment through the ADNI study, which just received a fourth wave of funding.

Other areas we’re investigating include prevention studies with people who are cognitively normal, but who have elevated beta-amyloid or genetic biosignatures that indicate future pre-disposition. We’re looking at a passive and active vaccine against amyloid production. And we have a number of different studies on the prodromal stage of AD, working with beta secretase inhibitors that block the production of beta-amyloid.

It’s actually a very exciting time in Alzheimer’s disease research. We’re seeing improved funding from federal sources and a rejuvenation of interest from the pharmaceutical industry. I’m quite optimistic that in the next five to ten years, we will make substantive progress in terms of our ability to limit AD. I think it’s overly optimistic to expect a cure in that timeframe, but we can certainly make a dent, particularly from an early intervention standpoint. Treating this disease early is the critical factor.

 

Skin Cancer Awareness and Prevention Efforts in Focus at American Academy of Dermatology

In March, Real World Health Care will launch a new series focusing on the behavioral health impacts of chronic illnesses. Until then, we will revisit a few of our recent blog posts that touch briefly on related behavioral health issues. This week, we revisit our profile of the American Academy of Dermatology. We spoke with the AAD’s new President, Henry W. Lim, MD, about the organization’s mission and some of the challenges and opportunities associated with preventing and treating melanoma and other skin diseases.

Real World Health Care: Please tell our readers about the overall mission of the American Academy of Dermatology.

Henry W. Lim, MD, American Academy of Dermatology

Henry Lim: The American Academy of Dermatology promotes leadership in dermatology and excellence in patient care through education, research and advocacy.

As the largest, most influential and representative dermatology group in the United States, and the largest such organization in the world, the AAD works to make sure its values reflect this mission. The AAD’s values include putting patients first, encouraging its members to adhere to an uncompromising code of clinical and ethical standards, fostering an interest in our members to pursue lifelong learning, encouraging collaboration and working within our communities and embracing diversity.

Public Education: Sun Safety

RWHC: How does the AAD’s mission address melanoma?

HL: It is estimated that 161,790 new cases of melanoma will be diagnosed in the U.S. in 2017.  That is a staggering number that could be reduced if people incorporated skin cancer detection and prevention behaviors into their lives.

The AAD works to increase public awareness of skin cancer and its risks through its SPOT Skin Cancer campaign, which is designed to create a world without skin cancer through public awareness, community outreach programs and services, and advocacy that promote the prevention, detection and care of skin cancer.

The first step toward a world without skin cancer is educating the public about prevention. The Academy has long communicated sun-safety messages to the public about the importance of skin cancer prevention and detection.

In addition, dermatologists have led the medical community in finding and treating skin cancer. For more than 30 years, dermatologists across the country have hosted 2.5 million free SPOTme® skin cancer screenings that have detected 28,822 suspected melanomas and 256,329 suspected skin cancer lesions.

To assist the public with learning more about skin cancer prevention and detection, the AAD offers a variety of free, online videos, downloadable handouts and skin self-exam resources, including a body mole map, as well directories to find a dermatologist and skin cancer screenings.

Melanoma & Skin Cancer Awareness

RWHC: What is the AAD doing in 2017 to recognize Skin Cancer Awareness Month?

HL: The AAD’s 2017 SPOT Skin Cancer campaign, Check Your Partner. Check Yourself, encourages the public to be aware of changes on their skin that could be signs of skin cancer. Research has shown that women are more likely to detect suspicious spots on others.  Men over the age of 50 have a higher risk of developing melanoma, than the general population, so the campaign encourages women – often the health care decision makers of a household – to check their partner’s skin regularly, check their own skin, and to visit the AAD’s SpotSkinCancer website to find a free SPOTme® screening in their area.

RWHC: Do you have additional initiatives you’d like to highlight?

HL: In addition to the activities for Skin Cancer Awareness Month in May and the SpotSkinCancer™ website, the AAD works with state dermatology societies and state legislatures to introduce and support laws and regulations that protect consumers and promote awareness about skin cancer prevention and the dangers of indoor tanning. As a result, 42 states have enacted tanning bed restrictions to potentially reduce the risk of melanoma and other forms of skin cancer.

The AAD’s Shade Structure Program awards shade structure grants to schools and non-profit organizations across the country in order to protect children and adolescents from the sun’s harmful rays.  Since its launch in 2000, the AAD’s Shade Structure Program has awarded 350 shade structure grants, which provide shade for more than 600,000 individuals each day.

The AAD also has a strategic social media presence on Facebook, Twitter, YouTube and Pinterest, designed to raise awareness about skin cancer detection and prevention.  Social media, including paid, promoted posts, reach our targeted audiences – the public, our members and the media – with links to AAD resources.  We encourage our followers to like, share and re-tweet our skin cancer awareness videos and tips.

Melanoma Research

RWHC: Does the AAD underwrite or otherwise support research into melanoma detection and/or treatment?

HL: While AAD is not a research funding organization, the AAD does provide annual awards for Young Investigators in Dermatology.  These awards recognize outstanding basic and clinical/translational research by young dermatology investigators and some of the projects are related to melanoma.

The purpose of the award is to acknowledge research contributions by individuals at the start of promising research careers that further the improvement of diagnosis and therapeutics in the practice and science of dermatology.

RWHC: What do you see as the biggest challenges facing researchers studying melanoma treatments and clinicians treating melanoma?

HL: The rapidly changing health care environment presents major challenges to researchers and clinicians in all aspects of dermatologic care, not just those studying and treating melanoma. 

A significant challenge is the inadequate funding for research, together with the pressure to increase clinical revenue generated by clinician researchers.  For many years, the American Academy of Dermatology Association (AADA) has been active in advocating increased research funding by NIH to dermatology research, including through our support of the 21st Century Cures Act.

The current health care system also presents barriers that impede patient access to the best possible care from a qualified physician.  To combat this, the AADA is working with all dermatology care providers and other physicians to confront these challenges.

In particular, the AAD recently launched a new specialty positioning campaign, SkinSerious, to raise awareness of the serious impact of skin disease. Our goal is also to improve access to dermatologists’ expertise and increase collaboration with our physician peers to ensure high-quality patient care. We know that when dermatologists work with other physicians as part of the health care team, everyone can benefit from improved patient outcomes and lowered health care costs.

Other concerns within the health care environment that the AADA is closely monitoring include the rise of big data and the growth of teledermatology.  We closely follow developments at the federal and state levels and, when appropriate, the AADA will take action on issues that can be influenced positively for dermatology and pursue opportunities to impact health care policy. 

Promising Melanoma Treatments

RWHC: What do you see as the most promising or breakthrough melanoma treatments on the horizon?

HL: This is an exciting era in melanoma research.  In-depth understanding of the molecular pathways of melanoma development has led to the availability of immune checkpoint inhibitors; combinations of these medications are being looked at in clinical trials.  Metabolic manipulation of the peri-tumoral environment to inhibit the growth of melanoma is being actively investigated.  Understanding of the genes responsible for melanoma resulted in the availability of gene expression profile (GEP) test that can be used to determine biologic behavior of melanoma.

Melanoma Prevention

RWHC: What are the biggest challenges facing the medical community in terms of increasing awareness of and adherence to melanoma prevention efforts among the general public?

HL: The challenges facing the medical community around melanoma prevention are two-fold.

One is the misconception that a tan is a sign of health.  Tanning is a protective physiologic response of our skin to damage caused by ultraviolet radiation.  There is no such thing as a healthy tan, yet people continue to seek the sun or use indoor tanning, thereby increasing their risk of skin cancer.  This is a particularly challenging message to get across to young women and men, who feel peer and societal pressure to be tan.

The AADA was instrumental, along with several other organizations, in having the FDA re-classify tanning lamps from the Class I to Class II medical device category, which requires more supervision and restriction in their purchase and use.  For the past several years, the AAD has released a new public service advertisement that focuses on the dangers of tanning, particularly targeting young women.  We know that melanoma is the second most common cancer in young women, and this may be due in part to their tanning habits.

The 2016/2017 public service advertisement is called “Arms,” and features two young women comparing their tans at various stages in their lives. The emotional ad concludes with the two friends clasping hands in the hospital as one of them reveals she has advanced stage melanoma.  This PSA, and our previous ones, have resonated strongly with young women, especially on social media, where they have liked and shared the video with their friends.

The second challenging misconception is that many people believe that sun exposure is the best source of vitamin D.

While our bodies need vitamin D to build and maintain strong, healthy bodies, the AAD does not recommend getting vitamin D from sun exposure or indoor tanning because of the increased risk of skin cancer.  In fact, it has been demonstrated that sun exposure that results in increased vitamin D levels is directly correlated with DNA damage.

Vitamin D from food and dietary supplements offers the same benefits — without the danger of skin cancer — as vitamin D obtained from UV light.  Vitamin D cannot be used by the body until it is processed by the liver and the kidneys. The usable form of vitamin D created by this process is the same, regardless of how it enters the body.

The AAD recommends dietary sources (foods naturally rich in vitamin D, fortified foods and beverages) and vitamin supplements as sources of vitamin D that are available year-round and can easily be incorporated into a healthy lifestyle. Good sources include fortified milk, cheeses and yogurt, fortified cereal, and oily fish like salmon and tuna. Research shows that vitamin D supplements are well tolerated, safe, and effective when taken as directed by a physician.

The fact is these myths are harmful because the consequences of this misinformation could be potentially fatal.

RWHC: What personally inspires you to build awareness of the importance of preventing melanoma?

HL: Having been in dermatology practice for 40 years, I see on a regular basis the devastating effects that melanoma has on patients and their family.  The risk of developing melanoma can be significantly decreased by sensible photoprotection, and avoidance of tanning beds.  The exciting new developments in the treatment and genetic profiling of melanoma reflect the value of investment in scientists and research projects, and I look forward to additional treatments in the future that will benefit patients.

 

 

 

 

Categories: General, Melanoma

Helping Others Get the Help They Need

Editor’s Note: We conclude our series on Multiple Myeloma with a profile of a patient who was struggling to afford her treatments until she received a grant from our sponsor, the HealthWell Foundation. 

The searing back pain was the first indication to Marilyn Gould that something wasn’t quite right. The 67-year-old retired architect from Baltimore started to feel the pain at age 62 and began visiting a variety of doctors and specialists to find out what was wrong.

Marilyn Gould

Blood work indicated high protein levels — a potential marker for multiple myeloma.  Imaging did not reveal any tumors.  Eventually, her L5 vertebra cracked and she had to have surgery.  It was during this surgery that a tumor was discovered inside her vertebra.  Two surgeries were needed to remove the tumor and replaced it with a titanium cage. 

“At that point, there was no question: I had multiple myeloma,” said Marilyn.

Relief, Followed by Concern

“Getting the formal diagnosis was almost like a relief, because I knew I was a candidate for the disease and tried to educate myself about what was going to happen,” she said. “But nobody told me exactly what to do.”

Marilyn’s hematologist suggested that she consult with a multiple myeloma specialist, who started her on a course of treatment that involves an oral chemotherapy medication, steroids, an antibiotic and four 30-minute bone infusions a year — a regimen she has followed for the last 5 years.

As can happen with many chronic and life-altering diseases, multiple myeloma and its related treatments have had an impact on Marilyn’s lifestyle, though she says she still remains fairly active.

“I don’t run anymore and can no longer play golf,” she said. “But I do a lot of walking, and some bike riding. I also practice yoga, which has helped tremendously with my stability and balance, which have been compromised after two back surgeries.”

The disease and its treatments have also had an impact on Marilyn’s financial security.

“My Medicare Part D coverage still leaves me with a significant copay for the oral chemotherapy drug that I need to take for three weeks every month,” she said. “It’s a $10,000 copay every year — a difficult amount to afford on a fixed income, or just about any income. I originally received financial assistance from another copay assistance foundation, but when they couldn’t renew my grant, I turned to the HealthWell Foundation.”

Reaching Out

Marilyn said that financial assistance for treatment copays is a common topic when she speaks with other multiple myeloma patients as part of her volunteer outreach work with the Leukemia & Lymphoma Society.

“Just about everyone I speak with has financial concerns,” she said. “I let them know about the existence of copay assistance foundations like HealthWell, as well as other help that is available, like the Maryland-based MobilityLink program, which provides transportation to and from treatments for people who can’t drive or don’t have access to other transportation.”

While Marilyn is quick to point out that she is not a medical professional and can’t give medical advice, she does have words of wisdom to share with other multiple myeloma patients.

“Don’t be afraid to seek a second opinion, especially if a bone marrow transplant has been suggested,” she said. “And because multiple myeloma tends to hit people over 50 more than younger people, I tell everyone of that age to stay current with their blood work.”

Supporting Multiple Myeloma Patients

The HealthWell Foundation, sponsor of Real World Health Care, is proud to have supported the multiple myeloma patient community in recent years with copayment and premium assistance. We have helped more than 9,000 multiple myeloma patients afford their treatments since 2015 — thanks to the generous support of our donors. Due to high patient volume, our multiple myeloma fund is temporarily closed until we receive additional funding. We invite corporations and individuals to help us meet this demand by contributing to our Multiple Myeloma Medicare Access Fund, so no one goes without essential medications because they cannot afford them.

 

Advancing Melanoma Research & Supporting Patients

Our series on melanoma concludes as we shine the spotlight on the Melanoma Research Foundation (MRF). We spoke with the MRF’s Director of Education, Shelby Moneer, MS, CHES and MRF’s Scientific Advisory Committee Co-Chair, Michael B. Atkins, MD, PhD, Deputy Director of the Georgetown-Lombardi Comprehensive Cancer Center, Georgetown University.

The MRF is the largest independent organization devoted to melanoma. Its mission is three-fold. It supports medical research that leads to more effective treatments and eventually a cure for melanoma. It educates patients, physicians and the public about the prevention, diagnosis and treatment of melanoma. And it serves as an advocate for the melanoma community to raise awareness of melanoma and the need for a cure.

Research & Patient Support Priorities

Real World Health Care: What type of research programs does the MRF support?

Shelby Moneer, Melanoma Research Foundation

Shelby Moneer: The Melanoma Research Foundation is committed to advancing a broad scientific agenda across the disciplines of prevention, diagnosis and treatment. As part of the MRF’s mission to support medical research to find effective treatments and a cure for melanoma, we are proud to collaborate with internationally recognized research institutions, investigators, government entities and leading melanoma organizations. The MRF currently offers research awards for medical students, junior investigators and senior investigators in both clinical and translational science. We fund research related to cutaneous, mucosal and ocular melanoma.

RWHC: How does the MRF support the patient community?

SM: The MRF provides a broad range of patient support programs offering access to peer-to-peer educational information, as well as professionally moderated support networks, financial and treatment assistance and more. These are continually updated and expanded as new resources become available because we believe that educated and informed patients with a strong support network live longer, better lives.

The MRF advocates for the melanoma community on the local, state and federal level on issues that promote melanoma awareness, prevention and treatment. Current priorities include increased federal funding for melanoma research, restrictions on the use of indoor tanning devices and expanded access to sunscreen in schools. The MRF trains and supports a nationwide network of dedicated volunteers who serve as advocates everywhere from their local communities to the halls of Congress.

RWHC: What are some of the biggest challenges facing researchers studying melanoma?

Dr. Michael B. Atkins, Georgetown-Lombardi Comprehensive Cancer Center

Michael Atkins: The MRF feels that the biggest challenge is helping to launch the careers of young investigators who are interested in doing research into the biology and treatment of patients with melanoma. The MRF is addressing this challenge by offering an expanded number of Career Development grants in the coming year targeted toward young investigators.

Treating Melanoma Patients

RWHC: How are clinicians addressing the challenges of treating patients with melanoma?

MA: For clinicians, the big challenges are learning how to optimally use new treatment options for patients with melanoma. For example, identifying how to integrate targeted therapy with immune therapy, when to stop immune therapy, how to treat patients with variant melanoma presentations (acral, mucosal, uveal) and patients with CNS metastases, how to treat patients with resistance to immunotherapy, determining the best adjuvant therapy for patients with resected high and intermediate risk melanoma, identifying predictive biomarkers for particular treatment approaches, identifying safe and effective combination regimens, and learning how to manage the novel toxicities of immunotherapies.

These questions can only be answered through continued clinical research. The MRF is addressing these challenges through the Melanoma Research Foundation Breakthrough Consortium (MRFBC), which brings together clinical investigators from 20 leading academic melanoma centers to design and conduct clinical trials addressing these types of questions.

RWHC: How can patients work with clinicians to optimize their treatment?

MA: Melanoma patients face the challenge of getting the best treatments for their disease in a setting that is convenient for them and will get them back to their normal lives as quickly and as functionally intact as possible. Patients can work with clinicians by participating in clinical trials aimed at both providing tomorrow’s treatments today and addressing the important unanswered questions facing researchers. Patients can also go to organizations like the MRF to gather information about optimal management of their disease, unanswered questions and available clinical trials. Their support community can work with and contribute to MRF to foster the clinical and basic research that will lead to even further advances in the treatment of patients with melanoma.

RWHC: What does the MRF see as the most promising treatments on the horizon for melanoma?

MA: The MRF sees many promising new treatment opportunities including novel combination immunotherapies, triple combination of BRAF/MEK and anti-PD1 regimens and moving effective treatments for advanced disease into the adjuvant high risk setting.

Categories: General, Melanoma

Cutting-Edge Melanoma Treatment at Rutgers Cancer Institute of New Jersey

This week, Real World Health Care continues our series on melanoma by interviewing two colleagues from the Rutgers Cancer Institute of New Jersey, a National Cancer Institute-designated Comprehensive Cancer Center.

Sharad Goyal, MD, is Associate Professor and Director of Clinical and Translational Research in the department of Radiation Oncology. He treats patients with brain tumors, melanoma and skin cancers, providing comprehensive cancer evaluation and the latest treatment planning technology to “map” tumors. He designs radiation treatments with pinpoint accuracy, ensuring that tumors get the most effective dose while healthy tissues and organs are spared.

Ann W. Silk, MD, is a medical oncologist who cares for patients with melanoma, and other skin cancers. She also leads clinical trials focused on combination treatment with immunotherapy and viral therapy for melanoma and other cancers.

Drs. Goyal and Silk discuss their work as part of a multidisciplinary team that translates research of investigational treatments and directly applies them to patient therapies.

Managing Multiple Melanoma Brain Metastases

Real World Health Care: How is treatment advancing for patients with multiple brain metastases (MBM) from melanoma?

Sharad Goyal; Faculty and Staff, Rutgers – Robert Wood Johnson Medical School, New Brunswick, NJ. 05/01/2014 Photo by Steve Hockstein/HarvardStudio.com

Sharad Goyal: The treatment of brain metastases from melanoma is controversial and includes surgical resection, stereotactic radiosurgery (SRS) and whole brain radiation (WBRT). Several new classes of agents have revolutionized the treatment of metastatic melanoma, allowing for subsets of patients to have long-term survival. Given this, management of MBM from melanoma is continually evolving.

As patients are living longer due to more effective systemic therapy, surveillance and management of intracranial disease is increasingly important. At this time, the standard of management for patients with MBM from melanoma includes SRS, WBRT, or a combination of both.

In addition, emerging data supports the notion that SRS, in combination with targeted therapies or immune therapy, may reduce the need for whole brain radiation. Prospective studies are required to fully evaluate the efficacy of these novel regimens in combination with radiation therapy. Given the advances in systemic therapy of melanoma, it is critical that oncologists treating these patients be aware of new treatment paradigms to optimize the outcomes for all patients with metastatic melanoma.

RWHC: Are there ways to treat melanoma in order to avoid or lessen the chances of brain metastases? Does early initial detection of melanoma help?

SG: Early detection of melanoma will always help reduce the chance a patient develops brain metastases. There is usually a fairly lengthy period when the tumor expands beneath the top layer of skin but doesn’t go any deeper. This allows time for screening, early detection, treatment, and a full recovery if the tumor is discovered before it spreads.

After a patient is diagnosed with melanoma, the use of certain anticancer treatments that are given after a cancer is surgically removed, such as interferon alfa and ipilimumab, will allow for an improvement in overall survival in patients with stage III or IV melanoma. In addition, the use of anti-PD-1 checkpoint inhibitors prolongs overall survival in patients with stage IV melanoma. Currently, many studies are underway investigating the optimal anticancer treatment in patients with Stage III melanoma.

Promising Therapies

RWHC: What are the most promising therapies on the horizon for metastatic melanoma?

Ann W. Silk, MD, Rutgers Cancer Institute of New Jersey

Ann Silk: Melanoma is the “posterchild” for breakthrough immunotherapies. At Rutgers CINJ, we are testing novel combinations of new agents coupled with immunotherapies. Those novel agents help to “prime” tumors so immunotherapies work better. One example of this is combining an immune checkpoint inhibitor pembrolizumab with intra-tumoral injections of talimogene laherperepvec, which is a live herpesvirus that infects cancer cells, replicates within them, and lyses the cancer cell, thus killing the cell. We’re also seeing promising early results in trials that combine intra-tumoral injections of coxsackievirus with injections of pembrolizumab, with response rate of 60%, which we reported at this year’s American Association of Cancer Research Annual Meeting. We have just recently opened a study in which we will combine IL-2 cytokine therapy with pembrolizumab, a combination of two drugs that have already demonstrated good activity in metastatic melanoma.  They are each FDA-approved as single-agents, but we are studying them as a combination therapy. The goal of these studies is to build on the success of immunotherapies to increase response rates, particularly complete response rates.

Access to Clinical Trials

RWHC: What are some of the biggest challenges facing researchers studying metastatic melanoma?

AS: Access to clinical trials is a challenge, from a patient or participant status. Running clinical trials requires vast resources and numerous support personnel, so they tend to be concentrated at large medical centers. As a result, only about five percent of the patient population has access to these trials. I think that number should be closer to 80 percent. Trials aren’t only important for the patients receiving the treatment; the knowledge we gain also helps future patients.

Treating Melanoma

RWHC: What are the biggest challenges facing clinicians treating patients with metastatic melanoma?

SG: One of the most challenging types of cancer to treat is melanoma and the most challenging area it can spread to is the brain. With the advancements being made in cancer treatment, the odds of survival for many of these patients are changing dramatically.

In recent years, our understanding of cancer biology has progressed substantially and this has led to the development of targeted therapies and immunotherapies. These novel therapies have prolonged survival in a disease which previously had a dismal outcome. As patients are living longer due to more effective systemic therapy, surveillance and management of intracranial disease is of increasing importance.

AS: There are many standard therapies approved to treat melanoma, and as indicated earlier, there’s lots of research activity in this area as well. Patients benefit from the wealth of approved therapies on the market. But while about 30-40 percent of patients will respond very well to these therapies, the majority still struggle and succumb to their disease. Patients who don’t respond to the first line of treatment must move on to a second line of treatment. Once those treatment options are exhausted, the only course of action is to try and get the patient enrolled in an investigational therapy trial. In many cases, the patient would benefit from earlier involvement in clinical trials.

Early and Current Inspirations

RWHC: What initially interested you in researching melanoma and treating people with the disease? What continues to inspire you?

AS: I became interested in the interplay between cancer and the immune system in my first job as a data manager at the Dana-Farber Cancer Institute, where I managed one of the first clinical trials of ipilumumab, which was later FDA approved with the distinction of being the first drug that prolonged survival in melanoma. I was inspired by researchers who were on the forefront of personalizing medicine by using the immune system to attack cancer cells. Ever since then, in both my research and clinical practice, I haven’t found any better ally in the fight against cancer than retraining the immune system to attack cancer cells.

SG: Throughout my career, I have been inspired by the cancer patients I treat.  The relationships that I have developed with patients and their families are unlike those in almost any other medical specialty. Once a patient has a diagnosis of cancer, I am able to see the patient and his or her family members on a regular basis and develop a long-lasting relationship with them.

New Series to Launch: Alzheimer’s Disease and the Central Nervous System

According to a report from the Alzheimer’s Foundation of America, as many as 5.1 million Americans may have Alzheimer’s Disease (AD), a figure that is expected to triple to nearly 13.8 million by 2050. Alzheimer’s is the sixth leading cause of death in America, and individuals with AD use a disproportionate amount of health care resources compared to people with other diseases.

While there currently is no cure for AD, researchers are optimistic that effective treatments are on the horizon. We look forward to highlighting some of this research with you as we launch our series on Alzheimer’s disease and the Central Nervous System. We’ll also be sharing perspectives and programs from leading Alzheimer’s patient advocacy groups.

We encourage you to check back here over the coming months, and don’t forget to join the discussion on Twitter via @RWHCblog.

 

Big Data in Healthcare: Speaking with Dr. Philip Bourne, National Institutes of Health

Our series on Big Data in Health Care continues this week with a conversation with Dr. Philip Bourne, Associate Director for Data Science, National Institutes of Health. Dr. Bourne discusses the goals of the NIH Big Data to Knowledge (BD2K) program and the challenges faced in leveraging big data to improve health outcomes.

Real World Health Care: Why did the NIH establish BD2K?

Dr. Philip Bourne, National Institutes of Health

Dr. Philip Bourne, National Institutes of Health

Philip Bourne: Several years ago, NIH Director Francis Collins set up a data and informatics working group in response to the increasing amounts of digital data being generated in biomedical research. That working group led to the development of BD2K.

RWHC: What are the goals of BD2K?

PB: As set out by the working group’s report, the goals of BD2K are to promote the “fair” finding, access, sharing, incorporation and re-use of digital content and analytical tools within the entire spectrum of health care. Our goals also include promoting enhanced and diversified training around the process of analyzing large amounts of data and achieving sustainability of the complete digital biomedical ecosystem.

RWHC: “Big data” is a big buzzword these days, and it’s being leveraged among a wide range of industries with varying degrees of success. Where does the health care industry currently stand in terms of its overall ability to generate, gather, analyze and share big data toward the goal of improving positive health outcomes?

PB: I think there’s a good analogy here between revolutionary changes in other industries and the potential revolutionary change that big data may bring to health care. Take the photography business as an example. When photography went digital, it disrupted the industry and created a completely different business proposition. Today, the photography industry has less to do with pictures and more to do with visual communications platforms like Instagram.

The same kind of disruptor has the potential to happen in health care with the digitization of information. The disruption is happening slowly, even though the growth of digital content has been exponential. Next, we need to get to the “infection point” where big data takes off and becomes disruptive.

Because health care is not a true free market economy like photography, there are more restrictions. Today, the patient really does not have control over his or her health information, but if they had such control, it could be transformative.

RWHC: What are some of the biggest challenges facing the health care industry in terms of its ability to use big data to improve health outcomes?

PB: One of the biggest challenges is the lack of qualified professionals and training for those professionals in conducting analytics. Big data also represents a cultural shift in the industry as we move away from traditional ways of doing research to newer analytical methods. We need more education on the implications of that shift.

RWHC: Where is the health care industry seeing the most success in using big data to improve health outcomes, especially as it relates to health care delivery, treatment optimization and cost containment?

PB: The industry is just beginning to define and use data in different ways, and early stage successes haven’t been widely publicized. With that said, our new ability to mine health data records and analyze them to identify changes is statistically significant and provides important predictive tools. For example, researchers at Stanford are studying body mass indexes (BMIs) in specific regions to see if there is any correlation between BMI and the amount of fast food restaurants in those regions.

RWHC: Are there any individual BD2K programs or projects about which you’re particularly excited? What sort of initiatives can we expect to see from BD2K during 2016?

PB: We’ve recently been focusing on privacy, which is a clear issue when it comes to human subjects: How does the industry protect patient privacy? We’re also bringing in different types of professionals who have experience in analytics, but in other industries such as digital media and entertainment. We recently had a funding call in this area and are looking forward to seeing how these non-health care professionals apply their skills to biomedical problems — how the entertainment industry can help us visualize large amounts of data in a meaningful way.

We also continue to focus on developing the Commons, which is a shared virtual space where scientists can work with the digital objects of biomedical research. We have a mandate from the federal government and the NIH to promote the sharing and accessibility of research output: outcomes of clinical trials, papers, software and other data. The Commons lets us do that. It’s kind of like putting a bunch of Lego blocks in a public square and seeing what people can do with them.

Categories: Big Data, General