9 posts tagged “partnership”

Q&A with Dan Barnes, CEO and Susan Gilmore, Executive Director, Community Engagement, FamilyWize

Posted April 22nd, 2015 by

FamilyWize Community Service Partnership is committed to helping improve the health and well being of individuals and communities. High-cost prescription medications can be the cause of financial stress for uninsured or under-insured consumers. In fact, cost is the number one reason people do not take their prescribed medications, which impacts the short-term and long-term health and financial stability of individuals and communities. FamilyWize’s mission is to reduce these challenges by making prescriptions more affordable for all, and helping people and communities live healthier and happier lives.

The FamilyWize Community Service Partnership was established by Dan Barnes in 2005 to help those in Pennsylvania’s Lehigh Valley get the medicines they need and deserve access to. Eight years later, Susan Gilmore, who had spent 25 years with the United Way at the local and national levels, joined the firm, adding her partnership and community expertise to their strengths.

Today, FamilyWize touches families in all 50 states and the FamilyWize pharmacy discount card is accepted at more than 60,000 pharmacies across the country, including CVS, Walgreens, Rite Aid, Kmart and Walmart.

Dan, tell us how you came up with the concept of the FamilyWize card and your vision when you first started.

DB:  The idea for FamilyWize came when my wife, who is a nurse, and I learned that a large part of our community could not afford their medications. With my expertise in wholesale consumer group buying in travel, we knew that I could apply my skills to finding ways to lower the cost of prescription medications.

Our initial idea was to provide a free assistance program to lower the cost of medicine, and with that financial aid, encourage individuals to fill and take prescriptions as directed. This plan ultimately became what FamilyWize is today: a community partner and health and wellness advocate that provides free prescription discount cards to people in need.

From your beginnings in the little town of Bethlehem (Pennsylvania) to the present day, what do the numbers look like?

DB:  It has been a joy to see a small program that started for our local community grow rapidly over the last 10 years into what is now a nationwide community service partnership serving people in all 50 states.

We have the privilege of working with over 100,000 community, public sector and healthcare partners as well as other business partners in this endeavor. Together, we have been able to help 8 million people receive over $2 billion of prescription medications, with cost reductions of over $800 million. This is money that they can put back in their pockets to stretch their budgets and expand resources for their families in the communities where they live.

Here’s a question for both of you: What impact, if any, has the Affordable Care Act had on your business?

DB: Many people that were uninsured and are now able to get health insurance as a result of being eligible through the Affordable Care Act, particularly those that were enrolled through Medicaid expansion, for the most part, no longer need assistance of this kind.

However, there is now a growing number of what we call “under-insured” individuals. This group has health insurance, but deductibles that are so high that their prescription costs are still unmanageable. We estimate that there are still well over 80 million people that need assistance, and because of this, we have established a goal of helping 25 million people save on their prescription medication costs by the end of 2020.

Now Susan, can you tell us a bit about your association with the United Way and how you helped forge that partnership for FamilyWize?

SG:  I was a United Way professional for 25 years and served at the national level with United Way Worldwide and as CEO of the United Way of the Greater Lehigh Valley, PA and in Amarillo, TX.   When we realized the impact that this assistance could have on our communities, we pulled together our partner agencies to try and get this free program out to as many people as possible, including the employees of many businesses that participated in our workplace campaigns. The program grew rapidly into a national effort and created a partnership with United Way Worldwide and almost 1000 of the 1200 local United Ways.

I was asked to join FamilyWize to lead the efforts with our community partners and to provide support and strategy so that together we can reach more people.

And what about your other partnerships – is that 50,000 number correct?

The number of partners now exceeds 100,000. Naturally it’s a challenge to coordinate that many partners, and our partnership with United Ways at the local level has been extraordinarily helpful.

As we learn more about where the need is greatest and where we can be most effective, we continue to add partnerships at both the local and national level. We are privileged to have national partners that include United Way Worldwide, the American Heart Association, the National Council on Aging, America’s Promise, the National Human Services Assembly, and the National Hispanic Medical Association, among many others.

And, Susan, it’s pretty clear that FamilyWize offers people real value. How do you see online communities like PatientsLikeMe adding to that value?

SG: We have learned over the past 10 years that a program like ours only grows through word of mouth. While we have reached 8 million people, it has been one person at a time.

We believe that online communities like PatientsLikeMe are critically important to increasing awareness of our program and helping individuals understand how important medication therapy is and that financial help is available.

Dan, your website says your goal of the FamilyWize Community Service Partnership is to save families and individuals $1 billion on prescription medicine by the end of this year.

What would you consider the biggest obstacles to meeting that goal?

DB: In a word, awareness. We have the tools to help but most of the people who need this help are not aware that it is even available to them. We are closing in on the goal that we set five years ago to save consumers $1 billion dollars on prescription medications, but reaching more people is an ongoing challenge. However, with partnerships and communities such as PatientsLikeMe, we believe that we can reach more people, more rapidly, with the help of trusted voices.

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Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership

Posted April 13th, 2015 by

AstraZeneca and PatientsLikeMe announced today that they’re working together to use patient-reported data to shape future medicines and help improve patient outcomes. While it focuses on an initial set of four therapeutic areas (lupus, respiratory diseases, oncology and diabetes) the partnership signals a significant step forward for patients worldwide. Bruce Cooper, AstraZeneca’s Senior Vice President, Global Medical Affairs and Ed Godber, PatientsLikeMe’s Executive Vice President of Life Sciences Ventures explain why.

What is this partnership designed to do?

Bruce Cooper: We’re focused more than ever on having patient-defined value drive our scientific developments. To do so, we need to understand more about what patients are experiencing day-to-day. Our partnership with PatientsLikeMe allows us to tap into a patient network with more than 325,000 members. Every minute of every day, they are using the website to track their condition and give others like them information and support. They’re also contributing data for research. Now, their shared experiences will become real world evidence that accelerates AstraZeneca’s R&D capability and delivers patient-centric medicines.

Ed Godber: Ultimately, we want to help AstraZeneca partner with patients so that patients shape the medicines of the future, those medicines lead to better outcomes, and patients can live the lives they want. It’s exciting to see how Briggs Morrison (Executive Vice President, Global Medicines Development, AstraZeneca) and his team have truly committed themselves to transforming the discovery and development process by focusing on what patients experience, and need.

How does this collaboration actually help patients?

Bruce Cooper: We have significant potential to accelerate an upgrade to the system by making the patient voice part of the DNA of life science processes, helping to generate evidence to support our R&D and drive our science. We want to better understand what is important to patients about all aspects of their condition and treatment, and then shape the profile of the medicines we discover and develop. And we want to empower patients to thrive to the fullest degree from this upgrade in how data is generated and shared.

Ed Godber: We’re really aligned on that point. PatientsLikeMe was founded more than ten years ago with a mission to put patients first, and to make their voice central to medical advances. We did that by enabling patients to learn from the experience of thousands of others like them, sharing important and varied information about their health in a way that is compatible with healthcare and research. We’ve already seen that this kind of sharing can improve patient outcomes and transform healthcare. So it’s important that we take “patientomics” to the next level. With AstraZeneca, we not only expand the network and data, but also develop the science and processes by which healthcare and discovery can be increasingly responsive to patient needs.

What’s the first thing you’ll focus on as you begin to work together?

Ed Godber: We have been able to quickly get into a rhythm of sharing innovation and best practice around how to integrate the patient voice into AstraZeneca’s R&D. From here, in the short term, we’ll work together to create a “how to” guide to incorporate patient centricity into the design and execution of our studies. The agreement is for five years, so we’ll continue to define and evolve what we focus on.

Bruce Cooper: I’m pleased to say too that we have begun to collaborate with clinical operations to integrate patient insights into trial design and execution. We also expect our medical strategies to be enhanced across our Therapy Areas. There are a number of areas that can benefit from the data that PatientsLikeMe generates, and I’m looking forward to exploring even more.

What does the future look like with this partnership in place?

Bruce Cooper: I see a world where patients are even more engaged in research, because they have greater access to it, and can shape the way we conduct research with them. I also see patients helping to shape the healthcare environment as a whole by bringing what’s important to them onto the government’s healthcare agenda, and even shaping the way healthcare is delivered in clinical practice in disease communities.

Ed Godber: We believe this can have a significant impact on the speed at which patients get the full value out of new and effective medicines in the real world, using all of the useful data about a patient’s experience at the right times in disease research, drug development, regulation, access and care.

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Taking control: from PatientsLikeMe member Letitia and our friends at the Partnership to Improve Patient Care

Posted April 1st, 2015 by

Many of you have already met Letitia. She’s part of the PatientsLikeMe epilepsy community, and from her Patient Voice video to Twitter (@Pulchritude81), she continues to be a rockstar when it comes to sharing her experiences and advocating for patient centered research. Her latest efforts focused on patient empowerment where she headlined a webinar with our friends at the Partnership to Improve Patient Care (PIPC). She followed that up with a post on PIPC’s blog and we wanted share what she had to say. Check it out below.

“My name is Letitia Browne-James, and I have had epilepsy all my life. Until I started to empower myself about my own care I was unsure that I would ever be cured. After my illness continued to get worse and the seizures more violent while I was trying to live life, I decided to look online for possible solutions because my experience with previous doctors continued to be frustrating and led to dead ends.. Finally, after a few months of research , I was equipped to ask the right questions, to demand better treatment, and even undergo a surgery that I originally didn’t even know existed.

At the age of 10, I was formally diagnosed with epilepsy, and I spent my life, through school and at work, suffering from seizures that continued to get worse. Years went by with multiple doctors and consults both nationally and internationally, leaving me frustrated and confused because the seizures were no longer appearing on scans and they continued to get more violent and frequent.

Eventually, I began doing my own research about my medical care and joined an online resource for patients called PatientsLikeMe. I learned that there were other options available, such as a 72 hour EEG that could detect what type of seizures I was having. My involvement with PatientsLikeMe eventually led me to find out about an epileptologist – a doctor specializing in epileptic care. My epileptologist performed tests that led him to accurately diagnose the type of seizures I was having. From there, I learned that I was a candidate for epilepsysurgery that I hadn’t heard about since I was about 10-years-old. . Prior to surgery, I asked many questions and went through a series of tests to make sure that surgery was the right procedure for me. And since my surgery in August 2012, I have been seizure free and I feel better than ever.

My experience with the medical care system and my efforts to be an empowered patient taught me a few things. Empowerment includes continuous collaboration and effort, not only from a medical team, but from us, the patients. If you are not happy with the care you are receiving or you feel like something is not right at any point in the process, it is important to empower yourself to research your treatment options, talk to other patients with the same condition to get ideas of what has worked for them as well as social spport, and speak out when you questions about the care being provided to you. The truth is, each patient is different, and every medical team should work for the individual person – not for the diagnosis. Solutions that work for one subset of patients do not necessarily work for all patients; the best treatment for the average patient is not necessarily the best for you.

Throughout my journey to find a solution for epilepsy, I developed my own passion – helping patients know that they do have a voice when it comes to medical decisions. I serve as a patient research advisor with 13 other patients for PatientsLikeMe. This expereince has allowed me to continue my passion in an environment that prioritizes patient-centeredness and patient empowerment. And the results speak for themselves. When patients are engaged in the decision-making process regarding their care, they experience better health outcomes and lower costs, while also developing trust in their providers.

Shared decision-making in the medical process cannot be ignored as the healthcare industry is making decisions on what treatments we should be able to access. Patients have to understand their options and make an active choice in their care to get the most out of their treatment. Patient preferences should matter to our healthcare team. And if it doesn’t, we should be empowered to find a different health care provider. As I’ve often said when speaking about patient empowerment: your doctor may be the expert in medicine, but only you are the expert on you.”

Visit the PIPC’s website to learn more about patient-centeredness and comparitive effectiveness research.


PatientsLikeMe members to be highlighted in patient empowerment webinar

Posted January 13th, 2015 by

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar.

On Tuesday, January 20th, at 2:00pm EST, the Partnership to Improve Patient Care (PIPC) is hosting their first “Patient Empowerment Webinar,” an online event focusing on the importance of patient engagement in their own healthcare and in health policy. Two PatientsLikeMe members, Ms. Laura Roix and Ms. Letitia Brown-James, will be participating in the discussion, and their experiences will be a part of the webinar. Here’s a little bit about Laura and Letitia, and more ways they’re already empowering others:

Laura is a member of the idiopathic pulmonary fibrosis (IPF) community on PatientsLikeMe, and she recently traveled to Maryland to speak at the Food and Drug Administration’s (FDA) Patient-Focused Drug Development Public Meeting on IPF.  Laura went with our very own Sally Okun RN, VP of Advocacy, Policy and Patient Safety and spoke about her journey and what it’s like to live with IPF. (She recapped her experiences in an October blog interview.) But that’s not all Laura shares – she’s a 3-star member on PatientsLikeMe, which means she is a super health data donor and always keeps her information up to date so others can learn from her.

Letitia has been living with epilepsy since she was little, but after connecting with the PatientsLikeMe epilepsy community she learned about new treatment options available to her, like surgery. She shared about her experiences in a video, and after receiving her surgery, she’s been living seizure-free for years. Letitia is also a part of the first-ever PatientsLikeMe Team of Advisors, a patient-only panel that gives feedback on research initiatives and creates new standards to help all researchers understand how to better engage patients.

The PIPC webinar is open to everyone, so if you’d like to join, please RSVP to the event coordinator via email. Hope to see you there!

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Shining a light on lung cancer

Posted November 21st, 2014 by

Back in 1995, a few organizations came together to recognize Lung Cancer Awareness Day – there were a few awareness activities and some scattered fundraisers. Fast forward to now. Almost 20 years later, over 125 different lung cancer events are spread across three continents during the month of November. This is Lung Cancer Awareness Month, and the Lung Cancer Alliance (LCA) wants you and everyone you know to help shine a light on this pulmonary condition.

Here is some information you might not know, and can tell others about lung cancer:

  • In 2014, over 220,000 new people will be diagnosed with lung cancer1
  • Lung cancer is the most common cancer among both men and women
  • Lung cancer is the leading cause of death among every ethnic group, and the second leading cause of death in the U.S.2
  • Almost 80% of those diagnosed are former or non-smokers

We got a jump-start here at PatientsLikeMe. Right on November 1st, some on the team joined in the LUNGevity Foundation’s ninth annual Breathe Deep Boston 5K Walk. They’re a new partner of ours, and together, we’ll be collaborating to increase the number of lung cancer members on the site so that more patient-reported information can potentially guide research on the condition. Check out what else our partners at LUNGevity are doing to raise awareness.

How can you help shine your own spotlight on lung cancer this November?

If you’re living with lung cancer, shining a spotlight might mean giving that extra support to someone who’s going through a similar journey. Vickie just shared her story on the blog, and there are more than 1,000 lung cancer members on PatientsLikeMe. Every day, they are giving support and finding answers from others who understand what it’s like to live with lung cancer. Join in.

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1 http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non-small-cell-lung-cancer-key-statistics

2http://www.lungcanceralliance.org/assets/docs/media/LCA%20Funding%20Fact%20Sheet%202011%20Final.pdf


A new collaboration and the work ahead: An interview with PatientsLikeMe Co-founder and President Ben Heywood

Posted April 11th, 2014 by

Earlier this week, PatientsLikeMe announced a five-year collaboration with Genentech. Our goal? To bring your experience – the patient experience – to a company that wants to learn more from the people who are living with serious diseases, and to better integrate your insights into their decision-making as they develop new medicines. PatientsLikeMe Co-founder and President Ben Heywood talks more about the work ahead.

So, why Genentech? What do you hope to achieve through this partnership?

Genentech is a leading biotech company and an acknowledged leader in oncology (which is where our initial focus will be).

We spoke with their teams for quite some time before embarking on this collaboration and I have to say that we just really like their approach. We’re very much aligned in our goals of defining a more patient-centric approach to research, development, and care delivery.

Their goal in working with us is to explore the use of our PatientsLikeMe network to develop innovative ways of researching peoples’ real-world experience with disease and treatment. I think we also hope and expect this collaboration will encourage broader engagement of others involved in the delivery of healthcare to support a stronger voice for patients like you.

How does this differ from your other collaborations?

What’s different with Genentech is that we’ll be exploring on a broader scale how the use of our patient network might develop new ways to research the patient experience. The broader access should allow for more agile, real-time use of the data and help align the strengths of the platform with Genentech’s priorities. This collaboration also helps PatientsLikeMe expand our cancer community, and we’re excited to be partnering with such a leader in oncology research and development on that.

How does this move “put patients first?”

Genentech is a forward-thinking company that is continuously working to patients at the center of their decision-making. By providing Genentech access to the health data shared by the members of our network, it will help them learn more from patients like you and better integrate your insights into their decision-making as they develop new medicines.

Is the focus on cancer new for PatientsLikeMe?

We have a community of people with cancer that have been using the site since we opened it up to people with any condition in 2011; many right now list cancer as a secondary condition, although some list it as their primary. Part of this collaboration is about using resources to enhance the tools within our network to help make the site even more useful for cancer patients. Of course what we build for one community will benefit all, much like we’ve done all along. The end result is a website that better serves people’s needs.


NurseTogether.com partners with PatientsLikeMe

Posted November 21st, 2013 by

 

 

Media Contact
Steve Curtin
Vice President
NurseTogether.com
+1 508.494.0776
stevec@nursetogether.com

November 20, 2013, Charlotte, NC — NurseTogether.com, one of the premier online communities for nurses, today announced it has signed a marketing partnership with the patient network PatientsLikeMe to support and promote the importance of the nurse-to-patient care relationship. The websites will share content such as blog posts, articles and speeches on patient-related issues.

“The foundation of our modern healthcare system has been built on the strong relationship between the nursing community as primary caregivers and the patients they serve,” said Jenny SolCruz, Vice President of Community at NurseTogether.com. “With this agreement, we’re empowering nurses with a wealth of information and resources that will help better manage the challenges they face every day.”

PatientsLikeMe unites people living with chronic diseases and conditions online so they can track their health, learn more about disease, and connect with others. “We’re excited to help those at the very forefront of quality care learn from a wider range of patient experiences,” said Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety at PatientsLikeMe. “Connecting our communities online will create a powerful resource for both nurses and patients.”

About NurseTogether.com
Based in Fort Lauderdale, Florida, NurseTogether.com is one of the fastest-growing, free online professional communities for nurses. Specializing in unique nursing lifestyle, career and professional development information, NurseTogether.com’s mission is to empower the nursing community through top-quality original content from experts, interactive web-based social media tools, and value-added services through key strategic partnerships in a variety of nursing and lifestyle disciplines.


Patient-focused organizations join forces to build awareness and participation

Posted September 10th, 2013 by

The innovative medical research philanthropy Cures Within Reach has announced a marketing partnership with PatientsLikeMe to work together to improve patient lives.

Sep. 10, 2013 – SKOKIE, Ill — Cures Within Reach, a non-profit focused on research to repurpose existing compounds for new and immediate use, and PatientsLikeMe, a patient network and real-time research platform, are both thinking out of the box to help patients get what they need in today’s challenging healthcare climate.

Cures Within Reach (www.cureswithinreach.org) is dedicated to saving lives of patients with both complex and rare conditions by sourcing, funding and stewarding research that repurposes FDA-approved drugs, devices and nutriceuticals.  Anecdotally described as “teaching old drugs new tricks,” companies and research institutions rarely embrace this methodology due to low profit potential, while the potential for creating effective and affordable cures or treatments for patients is very high.  Ideas for these projects come from researchers, clinicians and sometimes patients themselves.

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care.

The initial partnership will consist of cross-marketing programs to drive awareness and participation.  “Cures Within Reach is leading the way in a unique research model that makes a tangible difference for patients today.  We are happy to connect with an organization whose work so directly supports our patient community,” says PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers.

Dr. Bruce Bloom, President and Chief Science Officer of Cures Within Reach, shares that moving forward, CWR will “find collaborations with PatientsLikeMe and their powerful patient community that not only increase awareness, but also ultimately strengthen each organization’s research work and patient impact.”

To learn more about PatientsLikeMe, visit www.patientslikeme.com

To learn more about Cures Within Reach, visit www.cureswithinreach.org


Aetna and PatientsLikeMe Help Empower Members Through Collaborative Program

Posted February 14th, 2013 by

HARTFORD, Conn. and CAMBRIDGE, Mass., February 14, 2013 – Aetna (NYSE: AET) and PatientsLikeMe today announced a new program to help Aetna members improve the way they live with various health conditions. Through a one-year pilot program, Aetna is directing its members to PatientsLikeMe so they can connect with others who have the same condition, and access real-world symptom, treatment and outcome reports.

Aetna members can now receive information about PatientsLikeMe through Aetna Navigator®, Aetna’s secure member website, and access a customized PatientsLikeMe landing page. Aetna nurse case managers will also encourage members to use PatientsLikeMe to learn more about specific health conditions. Aetna is the first health insurance company to develop this type of integrated program with PatientsLikeMe.

“PatientsLikeMe is one of the most innovative and well-respected online patient resources. We share a common focus to empower people to make better health care decisions and lead healthier lives,” says Susan Kosman, R.N., Aetna’s chief nursing officer. “Some of the most useful information comes from the people who know firsthand what it’s like to live with a disease. Our collaboration will help us learn how Aetna members can benefit from real world information and patient-to-patient contact to make better, more informed health decisions.”

PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers adds, “Aetna’s focus to build a stronger, more effective health care system through collaboration with others makes Aetna a pioneer among payors and the perfect ally for PatientsLikeMe. Working together, we’ll connect members with information and resources to live better, so that patient experience continues to propel changes in our health care system.”

PatientsLikeMe connects more than 175,000 patients who are looking to share information on their health condition and learn from others who have similar experiences. Patients can create and share online health profiles that capture their disease experiences, including symptoms and treatments. This information helps create new insights into these diseases that can help advance medicine.

As part of the collaboration, PatientsLikeMe will share information, de-identified in accordance with HIPAA, with Aetna about how their members are using the website. Aetna plans to use this information to provide valuable services and tools to its members. Aetna will not share any Personal Health Information (PHI) or Personally Identifiable Information (PII) with PatientsLikeMe as part of this program.

About Aetna
Aetna is one of the nation’s leading diversified health care benefits companies, serving approximately 37.3 million people with information and resources to help them make better informed decisions about their health care. Aetna offers a broad range of traditional, voluntary and consumer-directed health insurance products and related services, including medical, pharmacy, dental, behavioral health, group life and disability plans, and medical management capabilities, Medicaid health care management services and health information technology services. Our customers include employer groups, individuals, college students, part-time and hourly workers, health plans, health care providers, governmental units, government-sponsored plans, labor groups and expatriates. For more information, see www.aetna.com.

About PatientsLikeMe
PatientsLikeMe is a patient network that helps improve lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. PatientsLikeMe has become a trusted source for real-world disease information and a clinically robust resource that has published more than 25 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.