On Friday, the Kaiser Health Network (KHN) unveiled “Pre$cription for Power,” a database of 12,000 donations from large pharmaceutical companies to US patient advocacy groups. KHN has done everyone a favor by making this information easily accessible. In addition, it has reminded us of the importance of disclosure at a time when confidence in the […]
Read the Full ArticleIncreased focus on patient perspective over the past few years has resulted in a flood of new firms pitching their ability to do work in this area. Just because someone says they do patient engagement, however, doesn’t mean they have the expertise to do it well. Effective patient engagement is relational rather than transactional, transparent […]
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Patient Advocate, Patient Centricity, Patient Engagement, Priority partners, R&D, Rare Disease, Strategy, ValueI remember sitting on a sagging sofa in a tiny house just outside a small town in south Mississippi, visiting an elderly widow whose only child had not come to see her in years. Her mangy, smelly dog decided I was friendly and jumped into my lap, shedding hair all over my dark suit. The […]
Read the Full ArticleDespite advances in industry integration of the patient voice into everyday practice, there is still a discrepancy over the monetary value placed on patient insights. Remunerating patients fairly for their input can have a particularly big impact in the rare disease community where patient engagement is a unique challenge. How can industry better address this […]
Read the Full ArticleI along with 79% of American adults, per a 2016 PEW Research Center study, have a private Facebook account. One day, I browsed my news feed and saw someone ask in a Facebook group, “Does anyone know anyone or is on immunotherapy that recommends the most effective [sic] for lung cancer?” I was surprised on […]
Read the Full ArticleI remember going to the Annual Society of Clinical Oncology (ASCO) meeting ten years ago and lung cancer was hardly even being addressed even though it has the highest mortality rate – higher than breast cancer, colon cancer and prostate cancer combined. This year was quite different. Lung cancer was being discussed everywhere including the […]
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Innovation, Patient Advocate, Patient Centricity, Patient Engagement, Patient Journey Mapping, R&DA Closer Look at the Crohn’s & Colitis Foundation’s Newest Initiative: The Clinical Trial Community Clinical trial recruitment is often one of the most challenging steps in the approval process for new treatments. For inflammatory bowel disease (IBD) patients suffering from Crohn’s disease or ulcerative colitis, new treatment options are often the “game changer” they […]
Read the Full ArticleThere’s a lot of buzz these days about Precision Medicine, the Moonshot, new targeted therapies and immunotherapies but one thing has not changed…. a cancer treatment’s efficacy and safety must be tested in a clinical trial. Historically only 3-5% of adult cancer patients participate in clinical trials. Genomic medicine creates even more challenges for the […]
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Early Engagement, Patient Advocate, Patient Centricity, Patient Engagement, R&D, StrategyInsights from this year’s European Conference on Rare Diseases and Orphan Products (ECRD) reinforce the necessity of fostering trust in collaborations between industry and patient groups. At the same time, they point to barriers that prevent the development of this essential component of successful partnerships. In a panel chaired by Mark Krueger, MPH, MK&A’s president, […]
Read the Full ArticleThough patient advocacy group development and function in emerging markets mirrors that of the United States and Europe, there are a number of pitfalls that require special consideration from pharmaceutical companies entering these regions. The evolution of patient advocacy starts with a small group of advocates focusing on spreading community awareness, education and information to patients, […]
Read the Full ArticleWhy do people facing cancer enroll in clinical trials? What does “value” mean to patients making decisions about their care? What is the impact of financial toxicity on people who undergo cancer treatment? How do caregivers describe their experiences? These are just a few of the important questions that the Cancer Support Community (CSC) explores […]
Read the Full ArticleMK&A is proud to introduce LEAD (Leveraging Environmental Assessment Data), a digital platform that monitors the impact of stakeholder organizations—patient groups, professional associations, and more—and identifies priority organizations based on your unique business needs. Loads of features make LEAD an indispensable platform for any company committed to stakeholder relations. The digital solution for targeted and […]
Read the Full ArticleOn November 12 – 13, over 300 individuals representing pharmaceutical companies, biotechs, and payers and patient advocates gathered in Geneva, Switzerland. Over 100 attendees represented patient advocacy organizations, a record for the Congress. On day one, following the opening remarks, we heard from Ségolène Aymé, coordinator and scientific secretariat for the International Rare Diseases Research […]
Read the Full ArticleOn October 26th and 27th at the Better Science, Better Health: New Healthcare Models meeting in Washington D.C., European and American health care leaders met in the US Congress to consider how new scientific breakthroughs such as targeted therapies, big data, and precision medicine will change drug development, approval and use. A consistent theme was […]
Read the Full ArticleFor 72 years CancerCare has been dedicated to offering “help and hope” to those affected by cancer. We are a pan-tumor organization that serves patients, family members and caregivers. We are often the first point of support for patients after their diagnosis. Last year, through a variety of free programs, we served over 170,000 individuals, […]
Read the Full ArticleBack in the day when I served as an advisor to industry as an advocate leader, more often than not I struggled to find the true purpose and outcome of lending my valuable time and expertise. At times, a company would reach out to several members of our leadership team at once, like telemarketers just […]
Read the Full ArticleRecently my mother, a retired registered nurse, told me something she was taught in nursing school which today most of us would find unsettling. Patients with terminal diseases, she was told, must not be informed of their illness. Only the families are to be notified, and it’s up to them to decide what, if anything, […]
Read the Full ArticleThis is the second in a two-part series about involving patients and advocacy groups in clinical trials. The first blog entry, can be found here: Patient advocate engagement in early stage development. Since 2010, MK&A and The Brooks Group have produced a syndicated market research report for the pharmaceutical industry to provide competitive benchmarking and […]
Read the Full ArticleTwice a year, MK&A associates attend an offsite meeting to plan, improve our skills and stay up-to-date on the latest in patient, professional and consumer trends and research. At our March meeting we invited a panel of advocates to discuss why and how their organizations are investing time and resources in the development process of […]
Read the Full ArticleEach year, the last day of February is recognized as “Rare Disease Day” – a day when those working in, and those living with, rare disease come together to try to improve the lives of patients. As a person with a rare disease and a survivor of another condition, I know that the search for […]
Read the Full ArticleThe advocacy community today recognizes the value of engaging with all stakeholders, including industry, to ensure that patients and families have adequate, up-to-date information and receive optimal treatment and care. Likewise, most pharmaceutical, biotech, device, and diagnostic companies grasp the importance of ongoing respectful dialog with advocacy organizations. But sometimes it may feel like an […]
Read the Full ArticleMK&A presents our first guest blogger, Pat Furlong. Pat is the Founding President and CEO of Parent Project Muscular Dystrophy (PPMD), the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy (Duchenne). Its mission is to improve the treatment, quality of life, and long-term outlook for all individuals affected by Duchenne […]
Read the Full ArticlePatient voice increasing in HTA decision making Today, patients play an increasingly important role in health technology assessment (HTA). HTA is the multi-disciplinary field of policy analysis focused on medical, social, ethical, and economic implications of development, diffusion, and use of health technology. In many countries, notably excluding the US, patients are invited to provide […]
Read the Full ArticleAs the patient experience and its value increases in significance for regulators and payers, leading companies will foster exceptional advocacy relations. For many years, patient organizations and pharmaceutical, biotech, device and diagnostic companies have found common ground in addressing access issues that have changed the lives of patients all over the world. In this ever-evolving […]
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