Government-sponsored, taxpayer-funded research ensures the health of our people and drives the health of our economy. The current policy of cuts and freezes puts both at risk.

For decades, Congress has provided strong, bipartisan support to research programs, not simply to help Americans stay healthy and live longer but to give American researchers, businesses, and other institutions a leg-up. This has meant that costly, labor-intensive scientific research doesn’t have to be completely shouldered through private funding.

It would seem that American businesses and institutions — in particular patient advocacy groups, the ambassadors of communities that benefit most from science that leads to innovations that can sustain and save lives – should want to vigorously defend government-backed research. But in today’s political climate, leaders are taking a “wait and see” approach. While this may appear prudent, now is not the time for complacency.

The old saying, “fail to prepare and you prepare to fail,” couldn’t be more timely. Patient advocates and other leaders need to act now to marshal facts about the essential benefits of government-funded science. They need to develop a strategy to express their expert points of view, identifying which topics they will speak out about and to whom, in order to be ready to assert their influence when the timing is right.

As new policies unfold, voices calling us back to this shared national interest are essential. Patient advocates and business leaders hold tremendous power – and responsibility – to help rally support for essential programs and remind decision makers of what’s really at stake. Here are three considerations, based on many years of guiding clients through successful thought leadership campaigns, that can help leaders plan their words and actions for maximum impact, even as they operate in a “watch and wait” environment.

1. Define What Is at Stake

Publicly funded research has saved many millions of American lives. Since 1969, the U.S. stroke mortality rate has decreased by 70%, largely due to NIH-funded research on treatments and prevention. The American Cancer Society estimates that 3.5 million lives were saved from 1991 to 2019 because of publicly funded advances. These are only two of many examples.

But if these very real impacts – which touch all of us – do not carry enough weight, consider that government subsidized research has also been a powerful driver for American businesses. Every dollar spent by the NIH in research funding in the fiscal year 2024 (FY24) generated $2.56 of economic activity, according to a new report, “NIH’s Role in Sustaining the U.S. Economy.” And those dollars enabled the development and production of penicillin and other life-saving antibiotics, antiretrovirals, Ozempic and other GLP-1s, polio and measles vaccines, and discoveries such as deciphering the human genetic code.

This taxpayer-funded investment has made American drug companies, med-tech, hospitals and biotech global powerhouses. In this way, the U.S. has led the world, both in innovation and economically.

2. Determine the Audience(s) You Want to Reach

If the last few weeks have proven anything, it is that local conversations can have national impact. And, it’s local economies that stand to benefit the most from publicly funded science. These communities and states will also suffer most acutely should funding continue to be withheld from research programs located in their communities.

A new study from the Association of American Universities found that in FY24, the NIH alone awarded $36.94 billion in extramural research funding to researchers in all 50 states and the District of Columbia, funding that supported 407,782 jobs and produced $94.58 billion in new economic activity nationwide.

That is all balanced on a knife edge at the moment. These figures demonstrate that local communities and their lawmakers – state and federal congresspeople and senators – are the natural allies of research programs that depend on federal dollars. Such programs put businesses and people to work in fields ranging from construction and maintenance to food services and research and development.

By acting hyper-locally, targeting the vulnerable communities and representatives who are impacted most by current policy, thought leaders can start to move the country away from self-harm towards a restoration of prosperity and health.

3. Actively Monitor for Opportunity to Assert Leadership

While it’s clear what’s at stake and who stands to benefit or lose the most, evaluating the right time to act is more challenging. What’s becoming more apparent is that, as the impact of cuts and freezes begins to be felt more broadly by patients, employees of local businesses and local communities – then leaders’ words will have more resonance and impact. Thought leadership will have an increasing ability to rally support and change minds.

In many places, this is already beginning to happen. Conducting outreach in those communities at the moment when the administration’s cuts are affecting people’s income and businesses’ bottom lines most acutely, leadership voices can begin to have an impact. Drawing attention to the struggles our neighbors are facing, and calling for action based on people’s experiences, the evident economic impacts, and real public health needs will resonate. Determining the right moment to act will take careful monitoring of economic and health impacts within key communities across America and seizing the right moment.

If advocacy groups want to continue to protect and promote the rights of patients, they must prepare to speak out. If the organizations, health systems and companies of the American health ecosystem that have been blessed with the fruits of publicly funded research want to continue to stay competitive, their leaders must speak out. If the small businesses that rely on their employees’ health and customers’ wallets wish to stay competitive, they, too, must raise their voices. What’s at stake is the health of all Americans and our nation’s world-leading position as the “arsenal of health.”

The time is now for leaders to make their plans. Those who are ready to speak will be thought leaders—and those who do not will not be. American thought leaders must prepare to speak up, loudly and often, to guarantee the future of U.S. leadership and to help America remain healthy—physically and financially.

The post For Leaders, When Is it Time to Speak Out for Science? appeared first on Medika Life.

Real-world evidence (RWE) captures health data from outside controlled clinical trials, such as wearable devices, patient forums, electronic health records, and symptom tracking apps. It reflects the daily realities of individuals managing chronic conditions, navigating medications, and seeking answers when the system fails to provide clarity.

As Yael Elish, one of the founders of the mega crowdsourcing transportation platform WAZE and now CEO and Founder of the patient RWE platform StuffThatWorks, has said, “Patients will never have a seat at the table until their data is considered part of the navigational guide for new medicines, devices, and indications of use.”

She’s right, but perhaps we must push ourselves to a new level of acknowledging why we are pursuing new approaches to care. This is not just about offering patients a seat at the allegorical table. It’s about acknowledging that the table of discovery and development exists for their benefit. The science, systems, and research all exist to serve their needs. Their voices and their lived experiences must inform the path forward.

A Silent Majority Speaks: The Data We Ignore

A recent survey conducted by StuffThatWorks, which gathered insights from more than 15,000 patients across 145 medical conditions, revealed a staggering disconnect. 92% of patients expressed a willingness to participate in clinical trials. Yet, 84% said they had never been asked, never invited to the table of health innovation.

This isn’t a communications oversight—it’s a justice issue. The system is failing those it claims to serve. Patients are ready to contribute. Some are out of options and want concrete action steps. They are waiting to be seen, heard, and engaged. Their personal care and experiential data they offer doesn’t just enrich our understanding—it recalibrates it.

“The Pharma Industry’s efforts to include patient voices have been a step in the right direction; however, they remain on a very small scale today,” notes Caroline Redeker, chief strategy officer at Advanced Clinical, a leading clinical research organization. “Interacting with a minimal number of patients without scale does not accurately represent the full patient population with the condition.  Using available static data (claims, EMR) detached from the patient covers the ‘what’ of patients – how many, where, with claims or treatments of a condition, and mostly in the US.”  

Redeker adds: “The more important factors in trial design include the ‘why,’ including most bothersome symptoms, effectiveness of treatments, regional differences, comorbidity considerations, and other valuable information to accurately design the right trial.  The ‘why’ information can only come directly from the patients.  The future will bring patients and their organized data to the table and include patient insights from all over the globe.”

Real-World Realities: Lessons from Ehlers-Danlos Syndrome

Consider Ehlers-Danlos Syndrome (EDS), a connective tissue disorder with 13 recognized subtypes, ranging from the more common hypermobile form to the rare, life-threatening vascular subtype. Each type carries a distinct constellation of symptoms and risks. Some people face chronic dislocations and mobility challenges, while others live with the daily fear of spontaneous organ rupture.

A single disease name masks and encompasses a spectrum of experiences. Standard clinical trial models often can’t keep up with that complexity. But thousands of patients with EDS are documenting their treatment responses, flares, and management strategies across RWE platforms such as StuffThatWorks—building a picture of this disease that’s as varied, inclusive and individualized as the people living with it.

“The StuffThatWorks survey expands the usual definition of real-world data to include this novel direct patient-inputted database,” says George Sands, MD, FAAN, FAHA, FACC, a former senior director at Pfizer and noted advocate for collaborating with patient communities  “Patients and patient advocacy groups want to partner with sponsors, whether pharma or academia, and to be fully represented in research endeavors. This is very different from sponsors looking to recruit and retain research participants more fully. This is about collaborating.” 

Dr. Sands adds, “Additionally, it is important to have all different patient populations, including people of color, so their data is included in the trials and can be used for clinical care. Otherwise, clinicians have to extrapolate based on those included in the trials; it doesn’t always work exactly.” 

That kind of data, born of day-to-day life, isn’t just complementary to clinical trials. It completes a fuller picture essential for developing effective treatments. Without it, we risk designing therapies that help in theory but fail in practice.

From Inside-Out to Outside-In

Much of medicine’s traditional approach to research is inside-out, starting with what companies aim to prove and working outward through the trial process. That’s not inherently wrong—it is how rigorous science is structured—but that is not enough.

We must also embrace outside-in realities as part of the innovation journey, where patients’ lived experiences inform what we explore, how we measure success, and who we prioritize.

Craig Lipset, founder of Clinical Innovation Partners, and co-chair of the unifying NGO/research industry Decentralized Trials & Research Alliance, and former Head of Clinical Innovation at Pfizer, has long championed a rebalancing of power in clinical trials.

“To earn and maintain trust, research participation must become a symbiotic relationship powered by a bidirectional flow of data and learnings, says Lipset. As patients share insight into study design, bring real-world data into trials, and share experience that shapes new endpoints, sponsors must commit to ensuring that study data and results are flowing back.”

That vision is becoming increasingly possible. With technologies that enable decentralized trials, remote monitoring, and electronic patient-reported outcomes, we can now collect real-world data at scale. However, that only matters if we respect what the data tells us and are willing to let patient experiences guide the research agenda. We give lip service to the importance of patient voice in biopharma research and marketing, but do we see them as “customers” of innovation?

The Science of Listening

Real-world evidence is the patient’s language—a narrative built not in labs but in lived experience. It’s not peripheral to science—it is science when equity is the goal. When patients share their stories, whether on online platforms, through wearables, or in digital symptom trackers, they are offering far more than an anecdote. They are offering insight. They contribute to the science of what works, for whom, and under what conditions.

And when we listen, we don’t just become better researchers. We become better healers.

We stand at a pivotal moment. Innovation can either deepen the divide between patients and science or bridge it. Real-world evidence is the support structure for that bridge. It offers us the opportunity to democratize discovery and reimagine research collectively.

Reflects StuffThatWorks Elish, “The current methods of involving patients in the clinical and health spaces are doomed to failure.  Patients’ voice will be heard ONLY when turned into organized data, at scale.  Because no one can argue or ignore organized data at scale. Once that’s accomplished, the integration of patient voice will proliferate and become easily accessible to everyone in multiple forms, including a simple AI-based chat question.  We are doing that at StuffThatWorks; it’s core to our mission and vision.” 

Ultimately, the patient wants to be invited to the table—but not as a token guest. Without them, there is no table worth setting. The patient is not a peripheral player in this system—they are the system’s purpose. They are not guests in the system. They may not be the core customer of the health system, a universe that centers around its economic viability. Still, in the world of health system kinetics, where we examine the relationship and priority of the sector pieces, they are the reason we unite to invent solutions to confront disease, despair and death.  And the future of medicine depends on how well we recognize that truth.

The future of medicine hinges on one choice—do we continue treating patients as passive subjects, or as co-creators of the care that might save their lives? That’s not philosophy. That’s leadership.

Interested in this topic – here is more to explore:

Aman Gupta: Patient Inclusivity: The Missing Piece In Pharma’s Global Innovation Strategy

The Need for High Quality, Reliable Information that is Data-Driven – A Conversation with Yael Elish

Gil Bashe: Real-World Evidence Unlocks Consumer Voice to Improve Care

The post How Real-World Evidence Proves the Power of Patient Engagement appeared first on Medika Life.

Recurrent respiratory papillomatosis (RRP) is just one of those unexpected HPV-driven conditions. RRP is not a sexually transmitted disease and patients are not contagious. An estimated 15,000 to 20,000 people in the United States and more than 125,000 globally have RRP. This burdensome disease takes several forms and impacts people’s upper or lower respiratory tracts or presents as recurrent lesions on the vocal cords or adjacent tissues that require endless corrective surgeries. The treatment often results in permanent damage to a person’s voice.

RRP falls into two demographic subtypes: juvenile-onset (even toddlers) RRP and adult-onset RRP. Each presents unique medical management and lifestyle difficulties, and in addressing these challenges, patient advocacy—raising awareness and building a supportive community—is critically important.

Since it has no Food and Drug Administration (FDA)- approved treatment or cure, patients and scientists devote energy and resources to ensuring people with RRP have access to information. They are in the loop about clinical possibilities for this rare disease. No cure doesn’t mean there is no action!

Beyond the physical challenges of dealing with the disease – and the missed life events and career detours resulting from repeated surgeries, patients also face significant and demoralizing administrative challenges, such as battling payers to cover care using drugs not indicated by the Food and Drug Administration (FDA) for RRP or deemed “not sufficiently proven.”

The lack of treatment does not mean the RRP community is without hope. They are resilient and courageous and are making meaningful connections through the patient advocacy efforts of the Recurrent Respiratory Papillomatosis Foundation. They are reaching and inspiring researchers at the National Institutes of Health to pursue breakthrough research and oversee clinical trials. They also connect with scientists advancing possible therapies at discovery and clinical-stage biopharmaceutical companies like Precigen and encourage them to move forward by enrolling in clinical trials.

Collaboration Accelerates Change

When people unite, their presence creates energy. The Recurrent Respiratory Papillomatosis Foundation, biotech company Precigen, the National Cancer Institute (NCI), and RRP patients and their caregivers met on June 11th at the National Press Club for the Inaugural International Recurrent Respiratory Papillomatosis Awareness Day. This was an inflection point for those who follow the rare disease category.

The gathering wasn’t about hype or baseless optimism; it was a meeting that brought people together, prepared and ready to roll up their sleeves and get to work. It was a day that reaffirmed a commitment to transparency and a truthful assessment of the current situation and path forward.

Virginia Senator Mark Warner, chair of the powerful Senate Intelligence Committee, which oversees cybersecurity efforts that are key to healthcare and innovation data protection, kicked off RRP Awareness Day by expressing his support for people with rare diseases and his desire to help RRP patients find their voice. Senator Warner stated his desire to advance research and innovation and ensure access to care, an expression of determination that reflected his long-standing record on behalf of people seeking treatment options and improved outcomes.   

RRP Foundation President Kim McClellan also spoke as an advocate for the RRP community and as a patient. “We are here to raise awareness about RRP and bring together critical stakeholders in a dialogue on important aspects impacting individuals living with RRP,” she said. “We invite and encourage anyone living with RRP, either as a patient, family member or caregiver, to join us in spreading the word about RRP and participate in clinical trials and advocacy efforts.”

The date of this groundbreaking gathering has special meaning for the RRP community. June 11th (6/11) corresponds to HPV variants 6 and 11 associated with RRP. As the date symbolizes, the gathering united people with the disease, their family members, congressional leaders, and researchers from government agencies and corporate partners in a community united in a common cause.

The opportunity to share and hear multiple perspectives enriched discussions and underscored the importance of taking a comprehensive approach to tackling this condition. Panels of experts and patients sharing personal stories about their journeys gave attendees an unmatched opportunity to delve into the intricacies and impacts of RRP.

Helen Sabzevari, PhD, President and CEO of Precigen, expressed that she and her company were “proud to join forces with the RRP Foundation to establish the first global RRP Awareness Day to bring visibility to the many challenges experienced by RRP patients and to help forge connections among patients, clinicians and government officials.”

A former NCI team leader, Dr. Sabzevari’s commitment to RRP awareness and patient well-being as an animating principle is a model biopharma company C-Suite executives would be wise to emulate. For her and her Precigen colleagues, patients are the focal point of every decision, action, and investment.

RRP Awareness Day was an inspiring platform for discussing struggle, stigma, and science. Lunch was optional, but tissues were required as attendees in the filled-to-capacity room listened to a patient panel on how RRP impacts people and their families. They learned how some individuals living with RRP have needed hundreds of surgeries over the years, beginning when they were toddlers or young children in primary school.

Culture Drives Clinical Performance

Therapeutic innovations are needed to ensure that future generations living with RRP have options reviewed and indicated by the FDA for treating this viral condition.

During the event, a panel of representatives from advocacy and research reflected on how their collaborative approach centering around patients – from the design of clinical trials to allocating resources that have enabled patients to participate in those trials – has been vital in accelerating the R&D process toward identifying and developing viable treatments. The panel included James Gulley, MD., PhD., NIH, Senior Investigator, Center for Immuno-Oncology, Acting Co-Director, National Cancer Institute/Center for Cancer Research; Scott M. Norberg, DO., NIH, Associate Research Physician, Center for Immuno-Oncology; Helen Sabzevari, PhD, CEO, Precigen; and Kim McClellan, President, RRP Foundation.

Dr. Gulley, who is part of the NCI team and has been instrumental in advancing research on RRP and its connection to HPV, emphasized the pressing need for innovative therapies. In his panel comments, Dr. Gulley highlighted the importance of collaborative research efforts to explore potential immunotherapeutic approaches that could offer new hope for patients suffering from this debilitating condition.

No Disagreement – Harmony

Panelists Gulley, Norberg, and Sabzevari applauded the patient community, acknowledging the courage of their readiness to volunteer to participate in clinical trials to speed possible therapeutics forward. It was a reassuring presence and a reminder that public-private collaborations, particularly for rare diseases, do more than spark hope; they spur action. The patient-panel takeaways were: (1) Connect with the RRP Foundation, (2) Support ongoing clinical trial efforts, (3) Prevention through HPV vaccination is key.

While there is still no FDA-approved treatment to manage RRP, this community remains resilient and upbeat, inspiring everyone facing the challenge of rare conditions. The RRP Foundation, Precigen, and NCI are on the same page—science is essential. People living with RRP can remain hopeful that this collaboration will continue until actions result in better options for this patient community.

The post HPV Urban Legends – From Contagion to Symptoms to Risks to Prevention – There Are More Rare Concerns that Deserve Our Attention appeared first on Medika Life.

Amid her surprising news, she discovered the Vancouver, Washington-based Pink Lemonade Project, a source of peer support and empowerment for breast cancer patients. Through their guidance, she rediscovered the strength within and built a new community of friendships.

This is the story of how Lisa Heathman turned medical lemons into “pink lemonade” and how she continues to navigate the maze of breast cancer decisions, drawing on the support of the patient advocacy community created by the Pink Lemonade Project. Her guiding mantra: “Get busy living or get busy dying.”

Gil Bashe:

I‘m going to jump in, and we’re going to explore your story because it is unique to you, and unfortunately, it’s not unique to women. It’s become a medical self-health tradition for women to have an annual mammogram, and I imagine that’s something you’ve been practicing for some time.

Lisa Heathman:

I always made a point of getting my mammogram. I got them regularly, and the diagnostic center always used to send me that letter afterward saying I have dense breast tissue, so the scan techniques were not nearly as accurate. A routine mammogram looks dark, and then if there’s anything alarming, it looks white. On a woman with dense tissue, everything looks white. It’s hard to find an anomaly in it because of the white-on-white. That is core to the problem. Because even though I was getting those mammograms regularly, they didn’t see the problem.

Bashe: 

You know, for women who have dense breast tissue, and it’s not a small number. It affects cardiovascular scans and mammograms – leading to the danger of false negatives.  I hear about this too often. 

Heathman: 

It’s pretty darn common.

Bashe: 

It’s the equivalent of going through the motions but not having a mammogram; It’s a public health risk worthy of greater awareness and physician-patient conversation.

Heathman:

Exactly. According to my doctor, I’m doing what I needed to happen from a self-care standpoint; there wasn’t a family history. My grandmother did have breast cancer, but my grandmother is just one-quarter of my genes. My physician didn’t regard me as particularly high risk. So when I kept getting those notifications that the screening tool wasn’t wholly accurate (and we talked about this for two years in a row), he told me not to worry.  Accessing advanced screening is challenging; the insurance companies wouldn’t cover it. That meant I had to get the screening and pay out of pocket. On top of that, I would have had to do that every year. We’re talking about thousands of dollars out of pocket.  

Bashe:

Insurance is a little bit like the law of averages. They think, “We’re not going to cover this because the chances of her having breast cancer are pretty slim, and if we cover it for her, we’ll set a precedent, and we’ll have to cover it for everyone. Let’s pretend we’re going through the motion of doing breast cancer screening.” 

Then boom, something happens.  There is something suspicious when you call up. I imagine your doctor said, “Well, come on in, and we’ll talk about it.”

Heathman:

Something you said reminded me of something I think is essential to share. And then, I’ll get to how I found my cancer. The other thing that’s recommended is that women do self-exams.

First of all, I breastfed both my kids, and I always had trouble in my left breast with clogged milk ducts and all kinds of lumpiness, nothing hard, nothing like they always used to say. If you’re feeling anything that feels like a pea or a pebble, that’s alarming. You need to be checked out. But if everything feels like it always has, you’re probably fine.

It always felt normal. My left breast was lumpy because it had been lumpy ever since I breastfed my kids. Nothing felt odd, and I never did have that hard stone or pea-shaped shot that they always say it feels like.

Bashe: How did this surprising discovery unfold?  How was this discovered?

Heathman:

How I found my breast cancer was a stroke of luck, which doesn’t sound like a stroke of luck when I tell you this story. My partner Tom and I went mountain biking. We were on a camping trip up near McCall, Idaho, mountain biking almost every day. One day, we decided to take the mountain bikes up to this lake – there was supposed to be great fishing up there. It’s five miles on the single track. There was one place near the lake where you had to cross a creek on a little bridge, and I fell off the bridge into the water! Fortunately, it was September, so the water level was relatively low, but the bike fell on top of me and pushed me into a tree trunk. I dislocated my shoulder.

When I got back to Portland, I told my doctor what had happened, and we decided that I should do a course of physical therapy because it was still painful. The physical therapist and I worked on this for about a month. Instead of getting better, the symptoms got worse. My physical therapist said I should get an MRI.

I had to see the doctor for an MRI, and he said: “It’s been a year since I’ve seen you, so you might as well just come in.”

That was the luckiest thing ever because when I went in 10 days later, he did the usual check of the lymph nodes. He was doing the examination and said, “How long have you had this lump under your left arm?” I said I didn’t know I had a lump under my left arm. I can hardly reach it right now because my right shoulder was so screwed up from the accident. He said, “I feel a lump under your left arm, and we need to get you in for an ultrasound.” That was the beginning of the odyssey of finding out I had breast cancer; it was just a stroke of luck.

Bashe:  I don’t know if it’s a stroke of luck, but it’s like, “How I dislocated my shoulder and saved my life.”  From the moment your doctor said, “What’s this lump underneath there?” What went through your mind?

Heathman: 

Honestly, I was not terribly concerned, and I’ll tell you why. I’ve always been very active and very healthy, and nothing traumatic or awful health-wise has ever happened to me. I first talked to my physician sister, and she said, “Well, it could be many different things. Let’s not get too worried.”

So I wasn’t upset. I was like, I’m sure it’s nothing, I’m sure it’s nothing, but it wasn’t nothing. I went in for the ultrasound. I was lying on the table, and it was quiet. I remember thinking I was tired. I could almost take a nap. She went away after she was done and was gone for a long time. I thought, well, that’s odd. Then the doctor came in, sat down, and asked me all these questions. “Have you been feeling okay? Are you losing any weight?” All of a sudden, I began to perspire profusely. Suddenly, I thought nervously, “Oh goodness, oh gosh. What is happening here?” My stomach was immediately nervous. “Uh oh. This is not nothing.”

All of a sudden, I was very, very afraid. I had never had cause from a health standpoint to be so scared. I was terrified, like we were not talking about a nothing thing here at all. He sent me then for a biopsy, I believe.

Bashe:

Did he say at any point you might be looking at cancer?

Heathman:

He did. That was the root of all those questions: are you feeling okay? Have you been losing any weight? I feel fine. And no, I have not lost weight. But I was just terrified. Suddenly, it was like it was real. I went in for the biopsy next, and it came back positive for cancer. I then had an MRI, where they could first visualize it. That was the first time anyone had seen that there was a tumor in my breast. It appeared pretty good-sized and had probably been growing there long.

Bashe:

The challenge with the diagnostic system, particularly the mammogram, is that we get into a “check the box” mindset, as opposed to the need for your doctor, other doctors, to say that if someone has dense breasts, we have to reject the mammogram approach, have a diagnostic procedure, and ensure coverage. At least reimburse women for the scan every other year.

Heathman:

You could alternate. Over the years, I’ve often thought, you know, it would have been great if every other year I had a mammogram one year and an ultrasound another year, and they could have alternated. Ultrasounds are not expensive; they’re standard.

Bashe:

A part of it is that the payor contracts with the radiology center to have mammograms done at a base price. Let’s say the insurance company will tell you to go to one of three radiology labs in your area. They’ve created a volume discount price. That discount takes precedence over your specific physiological or biological needs. That’s the challenge we face in the payor system: health for everyone, but not necessarily health for you.

Heathman:

Health for the average baseline. I learned from the Pink Lemonade Project that in the Northwest, one in seven women will be diagnosed with breast cancer at some time in their lives. Nationally, it’s one in eight. That’s many women.

Bashe:

How did you get involved with the Pink Lemonade Project?

Heathman:

That’s an interesting story. When I was first diagnosed, one thing that seemed right was to join a support group, so I did.

It was through my hospital, and I hadn’t even lost my hair yet. I was super early in the process. I think I lost my hair after my second or third chemotherapy round, but I was in the support group even before that –  just diagnosed. I remember my first support group meeting, which was not a Pink Lemonade support group meeting. It was just through the hospital.  It wasn’t completely satisfying, but of the eight women, one woman, Susan (Susan Stearns), well, we hit it off and became friends.

Susan got the job of CEO of the Pink Lemonade Project. I was introduced to Pink Lemonade through her and her fortune in working with this amazing organization, which drove the conversation and possibility.

Bashe:

The personal connection was very important here.

Heathman:

There’s a silver lining in this cloud, and that silver lining was Susan and the Pink Lemonade Project. They’re based in Vancouver, Washington. I live across the river in Portland, Oregon, and Susan Komen is a well-known breast cancer charity in Portland. What a lot of people don’t realize is that Susan Komen is no longer providing local support. They are only a national nonprofit now. The local programming in almost every community had to be pulled.

It is up to local organizations like the Pink Lemonade Project to pick up the slack and provide those programs locally that Susan Komen could no longer fulfill. Organizations like the Pink Lemonade Project must create opportunities and support for women seeking local support.

Bashe:

You had some difficult decisions to make then. You’re diagnosed with breast cancer. It sounds like chemo and radiation were part of the decision-making process, maybe more. Tell me a little bit – not about the medical stuff; I understand that, but the sense of how you felt at that moment and what role the Pink Lemonade Project played in getting your perspective. It sounds like you’re very self-aware and in touch with other people, but you’re now in what I’ll call an “extreme situation.”

You enjoy bicycle riding, fishing, hiking, skiing, and the great outdoors. Your sister is also an official hand-holder. You have a medical guide at your beck and call. Tell me what role the Pink Lemonade Project played in your life and what role you played in their life.

Heathman:

From the standpoint of an organization like the Pink Lemonade Project, I was very fortunate that I didn’t need to take advantage of some of the programs that Pink Lemonade delivers to women or people with breast cancer — because men get breast cancer, too, as you know.

Pink Lemonade provides practical support, transportation to appointments, treatment options, care for lymphedema and swelling after the lymph nodes have been removed, support groups, and valuable information, such as whether a woman needs a wig because she’s lost all her hair. I took advantage of some of the things that the Pink Lemonade Project provides.

I do have a good employer, a car, and good insurance. I had all those things covered. I have a really good support system. You could argue there wasn’t much I needed. What I found that I took advantage of was the support groups. They have a metastatic breast cancer support group. It’s geared mainly toward women who have a stage 4 cancer diagnosis, such as me. They are women who are in many ways in the same boat that I am in, and their questions are the same questions that I have, and the kinds of experiences they have are the same kinds of experiences I have.

Many women are older, have retired, and are no longer working. But not all of them – many of them are young women who are raising families. Many of them are younger women who are still working, trying to have a career while they’re going through treatment. That was important to me because I am still working, and I continue to work through treatment, but it hasn’t always been easy.

Having other women to bounce ideas off and get good advice was unbelievably important. The other important thing about being involved with an organization like the Pink Lemonade Project is that you are surrounded by women and people who hear what’s on the cutting edge of treatment. When you have a stage four diagnosis, your doctors, you, as the patient, and your family must understand that the breast cancer community, the medical community, is constantly coming to the table with new treatment ideas and new treatment options.

In time, treatments may stop working for a person, and they may need to go to whatever the next treatment is. And that’s incredibly important for someone with a stage four diagnosis because the treatment that I’m on may not always work. So that’s important, too.

Bashe:

As we spoke, I remember the first time you had a very reflective way of looking at this. You know you have a philosophical strength about life and being present. I also sensed you were quizzical about the future. There’s an authentic presentation when you speak. I’m curious if that mindset is present in your conversations with other members of the Pink Lemonade community and if the conversation is equally sharp.

Heathman:

That’s why there’s such a striking difference between the people I’m now talking to within support groups and that first experience, which was very negative and unsupportive.

The women in the support groups are very practical. It’s odd, but you rarely encounter a person in these support groups saying “Woe is me” or wringing their hands. By and large, they have been the most positive, gracious, giving, extraordinary women, people, but mainly women, and that’s what I needed in a support group. I needed to be surrounded by other people going through the same situation but meeting it with this: “We’re going to get through this.”

One of my favorite movies is The Shawshank Redemption, and Tim Robbins, one of the main characters, says a line that goes something like, “Get busy living or get busy dying.” I think about that all the time – here I am, and this is what I’ve got to get through today or this week, or this surgery or that treatment; I’m going to get busy living because it’s the only choice I have.

I’ve been surrounded by people making that same choice, which I needed in a support group. There’s no Pollyanna; not many women say this is not a big deal. It’s a huge deal. But they’re practical about it; maybe we’re all good at compartmentalizing it. This is a bucket that’s over here. This is another bucket that’s today. This is another bucket that’s tomorrow. I am still determining what the future will bring, but worrying about it doesn’t change it.

Bashe:

The sharpened sense of mortality creates a vibrancy about life. You might not have taken special vacations beforehand, saying, “Oh, I don’t know if I want to spend the money right now.” Now you say, “I think we will take that vacation. I want to go there and see that. I want to do that with you.” Does that play out from time to time? I don’t know about 20 years from now, but I do know right now.

Heathman:

It’s an excellent question. My version of vacation is being able to get outdoors and do the things I love, whether skiing, biking, hiking, or fishing. You’re right—I find it easier to say yes to those things because I don’t tend to talk myself out of them like, “Oh, you shouldn’t” or “It’s too expensive.” Life is short.

Those kinds of things are things that I need to experience, things that I need to do. This sharpened sense of mortality goes beyond just thinking about time away or vacations. It just factors into my overall decision-making. Are we going to build that addition on the house? My car was eight years old. Am I thinking maybe it’s time to get a new car? And it’d be easy to say I might not need that new car. Does that make sense? But if I decide that I don’t need that new car, I’ll not be getting busy living.

Bashe:

That line you shared about the Shawshank Redemption is true – “Start living.” You can think about the clock stopping, running out of line, the click, click, click. The clock is still working, and I don’t want to break down on the side of the highway. Why not enjoy the new car now?

Heathman:

Exactly. Why not do it now? Because you may not have forever. And to your point, Gil, we all imagine ourselves immortal until we have a significant health crisis. It’s too terrifying to think of the alternative, and most of us don’t until we have to. But in no way has it consumed me. I’m not going to say I never think about it. I think about it. I’ve even explored some things that are specific to that. But it isn’t as though I’m consumed by it. I don’t live my life like that.

Bashe:

“I’m here, and I need just to enjoy the fact that I know I could be elsewhere, so to speak, but I have a certain sense of strength and understanding that lean into the here and now.”

Heathman:

Some days are hard. There are things about being in treatment that are hard, and sometimes challenging things happen that are work-related or what have you. Then, I’ll join a support group, and I’ll be able to talk about what is happening. Someone will have had a similar experience, and someone else will have a funny thing to say about it.

Before long, I found that I was happy I was here and that they were here. There have been times when someone was not there. In particular, one woman is no longer a part of our support group because her cancer came back, and it came back with a fury, and she died. I still miss her. She was such an incredibly kind, caring, altruistic person. In support groups, you meet people who may show you something you didn’t see, something that feels like someone making your day better.

Bashe:

Well, they say you’re exceptional, and those that do are beyond spot on. The reality is that you’re in the midst of an adventure in which the ending has not been written, and you are very present about where you are and what you’re feeling, but you’re very much in harmony with other people. The support group, I think, the Pink Lemonade Project community, has brought out something that was always within you: the understanding that we need each other.

Heathman:

Absolutely. If there is a silver lining in all of this—and some days, it’s hard to find one—I have a much different understanding of others and what others want and need. It’s changed me. There’s no getting around the fact that cancer has changed me, and I think that cancer has changed me for the good as well.

I cannot say enough about my experience. Again, it is not always pleasant, and it’s not fun, but I feel so supported. I think back to that woman that night who I met who had nothing good to say about her employer, and I think, Oh, honey, I wish you’d had a very different experience, like I’ve had, of what real support feels like because I think she was bitter.

Bashe:

You know, it’s a two-way street. You’re an incredibly inspiring, uplifting person who understands and speaks about the importance of patient support groups like the Pink Lemonade Project.

Your experience is distinctly unique. You are an incredibly inspiring person, and the fact that you welcomed this special community into your life speaks volumes about your ability to recognize this level of life challenge is difficult enough – but going it alone adds another complexity to the health struggle. I think many people need people like you, Lisa; they need to read about people like you because it gives them a sense of hope for this day and tomorrow. Thank you for this time.

We often read about people confronting cancer diagnoses and their worries about therapy and survival. We read about varied patient advocacy and support communities. Lisa Heathman and the Pink Lemonade Project offer another perspective—how friendship forged through this difficult journey leads to better medical and emotional care. A key lesson is that people with dense breast tissue should take advantage—advocate for advanced screening!

You can connect with the Pink Lemonade Project, which offers support to men and women, through its website and follow its updates on social media.

The post A Cycling Accident Saved My Life appeared first on Medika Life.

But what bout when your immune system mistakes your tissues for a threat? You may develop an autoimmune disorder.

Autoimmune conditions include type 1 diabetes, rheumatoid arthritis, multiple sclerosis, Crohn’s disease, lupus, psoriasis, certain thyroid problems, and more. Women are more likely to develop such problems.

Autoimmunity: Definition

An aberrant immune response directed at a normal body entity characterizes autoimmune diseases. The immune system’s B or T cells (or both) get revved up without an ongoing infection or other detectable cause. This unwanted response leads to cell injury and inflammation.

Autoimmune diseases can be generalized or tissue- or organ-specific. They can be acute or chronic.

With the exceptions of autoimmune thyroiditis and rheumatoid arthritis, autoimmune diseases are fortunately relatively rare. Still, autoimmune diseases, in aggregate, strike five percent of the population in Western countries.

Autoimmune mechanisms

Autoimmunity affects targets such as proteins, carbohydrates, and nucleic acids. We call such targets self-antigens or autoantigens. On the other hand, a molecule from an infecting organism that stimulates an immune response is a foreign antigen or non-self.

While autoimmune diseases are the product of a pathologic state, autoimmunity is based on mechanisms that underlie normal immune responses to foreign substances.

We may divide immune responses into two categories, including innate and adaptive. The former is a rapid, non-specific response to stress, trauma, or an infection. On the other hand, an adaptive immune response is slow (days to weeks). We make B- or T-cell antigens targeting a foreign invader for an adaptive response.

So here’s the thing: An adaptive immune response can be persistent and retain memory. In this context, autoimmune disease is the product of a specific autoimmune response to an autoantigen. There is a system failure, as normally, the immune system should prevent this kind of hyper-reactivity to self-antigens.

Autoimmune disease treatment

Autoimmune disease treatment requires substances that lower immune system activity or block the inflammation that causes tissue injury. Sometimes, treatment targets a specific infection. Other approaches aim at a functional disturbance (for example, replacing insulin for those with type 1 diabetes).

Let’s turn to some ways to protect your body from itself.

1. Autoimmune: Get a team

Gather a team that takes a whole-person approach. Members may include:

• Rheumatologists treat joint diseases such as rheumatoid arthritis and other autoimmune diseases like lupus or Sjögren’s syndrome.
• Gastroenterologists treat diseases of the GI tract, such as celiac and Crohn’s disease.
• Endocrinologists treat conditions of the glands, including Graves’ disease, Hashimoto’s thyroiditis, and Addison’s disease.
• Dermatologists treat skin conditions, such as psoriasis.
• Others. Nutritionists, physical therapists, and others can provide significant value.

2. Autoimmune: Complementary approaches

Writing in the August 2022 issue of Prevention, Dr. Andrew Weil explains that while there is generally no cure for autoimmune conditions, many are manageable with prescription medications. In addition, lifestyle and natural remedies may help, too.

• Lower your stress
• Consider an anti-inflammatory diet. This approach includes more fruits and vegetables (preferably organic) and the replacement of meat with plant-based protein. Dr. Weil also recommends increasing omega-3 fatty acids (such as salmon or sardines). These maneuvers may tamp down inflammation.
• Consider supplements. Tumeric and omega-3 fatty acids may be helpful, but check in with your doctor before considering them.

More than 80 autoimmune diseases exist. I hope we can find better solutions soon. Thank you for joining me.

The post When Immunity Goes Rogue appeared first on Medika Life.

It may seem an almost impertinent question if you’re a drug developer. After all, the often-used response that investigators give to trial participants has been ‘good enough’ for decades: patients’ health may benefit from participation, and, whether they are in the active or placebo arm of a study, they have the satisfaction of knowing that they helped others with their disease by taking part. It’s true, and yet, today, it feels as though it falls short.

Patients living with life-threatening diseases have all their skin in the game.  Their time equals life, the ultimate valued commodity. These are the ready, motivated participants for clinical trials, and in exchange for their time and data, they and the organizations that advocate on their behalf should benefit from drug development through royalties that directly fund future research and advocacy priorities. When communities’ needs converge, great change is possible.

More Efficient Fundraising Drives More Immediate Patient Benefit

For decades, patient advocacy groups have looked to galas, walks and events as the prescribed formula to raise essential funds.  These gatherings are important opportunities to rally society, unite allies and sustain community, but they also take time, and the need for speed calls for creativity in advancing science.  Advocates should look beyond filling tables of 10. Their strategic plans should include partnering with contract research organizations (CROs) as pathways to advance drug development as well as fostering awareness, advocacy and treatment as part of their missions. 

The currency that makes this possible is the exchange of data, which are essential to all therapeutic advances. That requires patient advocates to think differently about working within their communities and with academic centers, contract research organizations and industry.

“The need for diversity and greater decentralization in clinical trials will requires new kinds of data exchanges with patients,” notes Irfan Khan, MD,  CEO, Circuit Clinical. “With our industry’s need for these novel collaborations also comes the chance for real change.”

Data as Currency

Amazon, Apple, eBay, Facebook, Google, and a host of other immense social communities prove repeatedly that data are essential currency for economic success. Giants in consumer data analytics get smarter by tracking online information, transforming searches into “what to buy next” prompts. Whether we accept or reject their approach to user privacy, we must also acknowledge their mastery of data monetization.

The concept should be nothing new for academic research centers, which have long monetized health data. Google Scholar and University of California-Berkeley Professor Dawn Song created a secure path for patients to share data with researchers by launching software company Oasis Labs. Why can’t patient groups also benefit from this approach?

Paddy Padmanabhan, co-author of the best-selling book Healthcare Digital Transformation — How Consumerism, Technology, and Pandemic are Accelerating the Future writes, “As traditional healthcare enterprises confront emerging competition from non-traditional players, some of them have started realizing the competitive advantage they have in the form of vast amounts of data they have on healthcare consumers’ medical histories.” Those ‘non-traditional players’ don’t just mean Amazon or Google — they may well be the patients themselves organizing to ensure they have greater sway in setting clinical priorities.”

Facilitating — and Funding — Innovation

Patient advocacy groups can build models that amass more information for clinical research and even work to fund these initiatives as partners. Before planning their next virtual gala or whiteboarding ideas on determining their “Ice-Bucket Challenge” moment, they should also look at how the ALS Association applied those monies to increase research funding and accelerate clinical possibilities. Beyond simply providing capital to fuel innovative ideas, they became drug start-up companies’ investment partner.

There are many ways to use data to create mutually beneficial partnerships. The GenTAC Alliance (National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Related Cardiovascular Conditions), launched by NHLBI and NIAMS, enrolled more than 3,600 patients between 2006 through 2016. By putting this registry to work, The Marfan Foundation is looking to partner with biopharma companies to fulfill its patient-support mission to discover new treatments and cures for life-threatening genetic aortic conditions.

Biopharma companies already want patients and their communities to have a seat at the table, but collaboration is more than simply communicating. It’s about creating common ground for mutual success. Economic models that address multiple interests may be a new remedy to make that happen more frequently, and groups such as Let’s Win for Pancreatic Cancer and The Christopher and Dana Reeve Foundation have taken on pinpointing cutting-edge research that may sustain life, bringing collaboration with drug developers to another level.

The culture of drug development is shifting. In the new edition of Alzheimer’s Disease Drug Development – Research and Development Ecosystem, edited by Drs. Jeffrey Cummings, Jefferson Kinney and Howard Fillit, there is a chapter dedicated to “The Role of Professional and Patient Advocacy in Advancing Alzheimer’s Disease Drug Development.” I was privileged to co-authored this chapter with neurologist and psychiatrist Amir Kalali, MD where we note: “While fund-raising efforts such as walks, galas, golf outings, and conference sponsorships still occupy their workflow (of advocacy groups), the focus on these monies in the digital era has shifted from awareness building to being leading sources of research funds.”

Can Patient Advocates be Agents for Patient Data?

Companies such as Hu-manity.co pose an essential answer to the question, “who owns your data?” Its Founder and Board Chair Richie Etwaru wrote, “…the simple idea that we should put the consumer (the patient) into the center of the healthcare data supply chain with ownership rights literally at their fingertips is both powerful, and timely.”

This is a movement in the making. Biopharma companies might find that by advancing this idea, they can accelerate mutual interests. Craig Martin, CEO for Global Genes Foundation Alliance, a rare disease advocacy community with more than 600 member organizations, advocates for a more inclusive partnership between patient groups and the biopharma industry.

Industry so far seems receptive. Led by Co-Chairs Amir Kalali, MD, and Craig Lipset, The Decentralized Trials & Research Alliance, a 150+-member organization uniting industry, academic centers, contract research organizations (CROs), regulators and patient advocates, is sparking the conversation among a research community that speed, diversity and inclusion in bringing new therapies to market — and to patients — is in everyone’s best interests.

It’s Not About Going Virtual — It’s About Collaboration and Mutual Benefit

Apple, Google and Microsoft are dominant companies to follow for trends and developments in technology. But they are also advancing collaborative economic models that drug developers and patient communities should emulate. They pioneered the idea of mining unpolished data and turning it into a new currency for commerce.

All drug development is built on clinical research, in which patients’ participation is essential in defining safety and efficacy. Increasingly patient groups are realizing the vital importance in the role they play. What might happen if industry more equitably includes patients and their advocates? Could timelines be advanced if patient groups had benefits similar to research sites and CROs? What might happen if Food and Drug Administration Advisory Boards were required to meet with patient advocacy ambassadors to accountably explain how their recommendations impact future care and innovation?  

We know the past.  We have attended enough patient advocacy galas to acknowledge the need to learn from other successful models. Deploying data is the obvious, simple economic pathway for accelerating decision-making and growth. But, less obvious, data are also the currency that may enable patients and advocacy groups to accelerate their own missions, becoming full-fledged partners in driving innovation and drug development, while becoming stronger, more sustainable communities.

The post Data is the New Currency for Life-Saving Innovation; We Should Treat it that Way appeared first on Medika Life.

As John Nosta pointed out, if a conference charges attendees/sponsors/exhibitors, then there is money available to compensate speakers.  Often, I speak on panels with executives who represent their employers as part of their paid, already full-time jobs. Many patients are self-employed, on disability, or both. This is compounded by the financial toxicity of what qualifies us to, unfortunately, identify as “patients” in the first place:  a chronic illness that in some cases disallows full-time employment. Therefore, the expectation needs to be that payment is always provided, whether for virtual or in-person opportunities, to value proficiency, time, preparation, travel, and expenses.  If a patient is working in a research setting, compensation should be an additional line item written into a grant. 

A patient perspective can generate leads as well as increase social media and content engagement for your organization.  Also as Alicia Staley notes, “it can change the way an organization thinks from the inside out.”  Patients should be classified as consultants and advisers when we contribute in a professional capacity to industry or health systems.  Our training through combined lived experience and individually sought expert knowledge is the equivalent of anyone working intensively in the field.  And that is worth a whole lot. 

When not extending our services in a ‘work’ capacity, patients are fulfilling the ‘mission’ part of our identity: as advocates.  In this role, we serve our peers to publicly support or recommend a particular cause or policy.  Some of us are paid as advocates, but most of us are not.  Ultimately, an advocate represents an underserved individual or community in the spirit of collecting information to disseminate back to them for improved outcomes.  The advocate serves as that person/community’s voice for positive change.  The goal is that we advance learning and do better. Many of us as advocates feel a certain calling to “pay it forward” for those who come after us – that they have an easier time of whatever plight befalls them than we did. It’s a desire to contribute to the greater good. 

In this quest for knowledge, patient advocates seek to attend conferences and webinars when/where we can carry key takeaways back to our constituents. Since social media during COVID leveled the playing field for a variety of stakeholders in the healthcare ecosystem, all healthcare-related conferences and webinars should have a patient advocate category for registration.

Matthew Herper of STAT news stepped up to resolve my tweet ask, and now there is a patient advocate category. Kudos to Matt for his leadership in making a change for patients that others will follow. Michael Gaspar was instrumental in helping #HIMSS20 and #HIMSS 21 embrace patients. I’m also working with Victoria Tiase to include patient advocates at AMIA.  Back to my above point regarding our position of being financially compromised, the registration fee for patients should be discounted or ideally free.

I am hopeful for durable change this year in these two areas for those of us who identify as patients: pay for performance and inclusion, not only as attendees at conferences but as valued speakers and panelists.  I will continue to call out conferences that have areas of improvement for patients – not in a snarky way as Dr. Matt Keener thoughtfully pointed out, but with love and empathy. 

Every time I share examples from the ‘journey as a patient’ time in my life with a client, I ultimately receive numerous direct private messages from employees who reach out to tell me what they maybe don’t what anyone at their company to know:  that they felt seen and represented because of an illness they are dealing with or a loved one they are caring for. 

COVID unfortunately created more “patients” than ever before and exposed a level of vulnerability never before felt.  If you’re of a certain age like me, you’ll recognize that the title of my blog is a song reference.  Even though there are mountains in our way, we climb a step for patients every day. 

Stacy Hurt, MHA, MBA works as a Patient Engagement Consultant to represent the consumer perspective in clinical decision making, health IT user experience, and pharma/biotech drug development.  She was the patient keynote speaker at DPHARM 2021 and is a HIMSS Digital Health Influencer.  Stacy regularly advises on how COVID innovations such as telehealth need to remain as permanent options to enhance patient care.  Connect with her at https://stacyhurt.net/

The post Patients: Up Where We Belong appeared first on Medika Life.

About Stacy

Stacy Hurt dedicated 20+ years to healthcare and physician practice management in such areas as sales, marketing, training, operations, customer service, and human resources.  Her personal and professional experience on the care delivery side has been a unique advantage to Stacy as caregiver for her intellectually and developmentally disabled son and as a stage IV colorectal cancer patient/survivor navigating the health system. 

Stacy has volunteered for The Colon Club, Colorectal Cancer Alliance, Colon Cancer Foundation, Colon Cancer Coalition, Fight Colorectal Cancer, American Cancer Society, UPMC, Lyfebulb, and Clara Health. Her viral story of a “random act of kindness” from a Southwest Airlines employee was featured on ABC World News Tonight with David Muir, The Today Show, Inside Edition, Fox News, Huffington Post, Forbes Magazine, and other major news outlets around the world.

Stacy is a voice for placing patients in the conversation and decision-making when it comes to medical decisions with life-changing impacts.  As a Patient Consultant, Stacy connects pharma/tech companies and health systems to their end-users by sharing her first-hand personal perspective and strategic expertise.  Her areas of focus are digital health, patient engagement, cancer survivorship, resilience, patient centricity, invisible disabilities, and the patient/caregiver experience.

She holds a Bachelor of Science degree from Penn State University and a Master of Health Administration and Master of Business Administration degrees from the University of Pittsburgh. Stacy is a certified personal fitness trainer, member of the Healthcare Businesswomen’s Association, member of the #TelemedNow thought leader group, member of the Society to Improve Diagnosis in Medicine, a HIMSS “Digital Influencer”, and has recently been appointed to the board of Digatel Salutem

She resides in Pittsburgh, PA with her husband and two sons.

Consulting and Public Speaking

Stacy’s opinion is highly valued in her fields of expertise and she enjoys the support of many leaders within the field of digital health and patient care, including the likes of Gil Bashe, Health Chair at FINN Partners, Dwight French, Healthcare Lead at Red Hat Technologies and Heather Tomlinson, Director of Clinical Diagnostics at Promega Corporation.

Stacy is available for speaking engagements. She is a member of the National Cancer Survivors Day® (NCSD) Speakers Bureau and her voice is sought after by support and patient advocacy groups. In her own words;

If you are looking for a real life comeback story delivered with energy and emotion (sprinkled with humor), then book me for your next event. Despite my fear and grief, I have found a way to defy all odds…for my family and myself. Listen to my story and know that you too can find what it takes to keep going, no matter what obstacles you may face. Or request one of my three popular talks: “Large Shoe Empathy”, “You Lead By How You Live”, or “Give It All You Got” (sports themed).

If you’re concerned that your business, practice or health based applications may not be patient-centric, or you may simply want confirmation that you’ve hit that patient care sweet spot, then look no further than Stacy. She is uniquely qualified to advise your business, from both perspectives, the patient experience and the industry’s view. She can bridge the gap between your team and your customers through implementing patient focused solutions.

If you’d like to take your patient engagement to the next level, Stacy’s input will be invaluable.

Connecting with Stacy

If you’d like to reach out to Stacy, engage her services, or connect with here professionally, you can do so via the links provided below.

• Twitter
• Facebook
• LinkedIn
• YouTube
• Link

The post Stacy Hurt is The Global Patient Advocate appeared first on Medika Life.