In this exclusive conversation, I join Hal Wolf, President and CEO of HIMSS, to explore HIMSS’s evolving role in fostering collaboration between hospitals, startups, and policymakers. With the health-ecosystem landscape tracking the early days of a new administration, uncertainties remain—ranging from regulatory shifts to funding allocations. Yet, as Wolf underscores, HIMSS remains steadfast in advancing health equity, supporting digital transformation, and offering actionable strategies that improve care delivery.

This conversation occurs between ViVE in Nashville and HIMSS in Las Vegas—two health gatherings that bring innovators, policymakers, and industry leaders together. While ViVE spotlights digital health startups, investment trends, and edgy sparks, HIMSS serves as the broader convening ground for professionals shaping the future of health information and technology. HIMSS is where the work happens—the “Davos” of health information.

Wolf outlines key issues such as integrating artificial intelligence in hospital systems, the role of primary care in driving better patient outcomes, and how organizations must balance innovation with financial realities. At HIMSS, essential dialogue between established institutions and emerging disruptors has never been more crucial.

Join us as we delve into the forces shaping the health system’s future—where technology, policy, and leadership converge to improve patient outcomes and system-wide efficiency.

Medika Life Editor Gil Bashe: In examining hospital systems, we focus on how information flows within our industry and who has access to it. We still have a lot to learn. These are the first few weeks of the new administration, and we don’t know how things will unfold, how the Senate Committees will approach these discussions, or how actions will be implemented. Will we rely on Executive Orders? If that’s the case, we know where to focus our attention. You’re a remarkable ambassador for the discipline and the sector, and certainly for HIMSS, a professional association, trade association, and global NGO.

People come to HIMSS with tremendous optimism, hoping to gain insights that will make them more effective. I prefer to focus on current developments and HIMSS priorities rather than just reacting to them; that’s a different conversation. I’ll also note that the administration’s conversation around health access, cost, and priorities is still in motion.

HIMSS CEO Hal Wolf: We don’t know enough to discuss new policies and their potential outcomes. One challenge will be securing funding. While we know things will be different, we don’t know where the policies will land. Still, we know that HIMSS is dedicated to its vision and mission statements as they fundamentally relate to realizing the full health potential of every human everywhere.

We are dedicated to health equity and will stay dedicated to it. Our collaboration with governments and NGOs worldwide and our fundamental principles will not change, nor should they! We’ll work with our principles within the context of whatever comes out of the White House.

We worked well with the previous Trump administration and collaborated effectively with ONC and HHS on various initiatives. We look forward to advancing the HIMSS mission within the established parameters.

Bashe: HIMSS is far more than an annual mammoth gathering; it’s a professional society that covers the full spectrum of health information and technology – from cybersecurity to economics to professional development and government policies. Unlike other popular meetings that primarily focus on networking, HIMSS is where professionals from around the globe come to set objectives, strategies, and operational priorities. It’s 30,000 feet and 3,000 in scope.

Wolf: This morning at 6:00 a.m., I had an interesting conversation with the CEO of a successful start-up that is getting distribution now and beginning to roll. At HIMSS, we see the merging of different worlds.

We have our core population, core members of the health ecosystem– hospitals, clinics, health operations, nurse practitioners, CMIOS, CIOS, physician leaders, and administrators. This group represents a significant portion of the HIMSS membership, which includes over 120,000 members.  

On the other hand, we have the entire global app ecosystem that drives innovation and introduces new ideas. As you know, many of these ideas and innovations are driven by personal experiences. A family member encountered a situation, and they tried to solve it. Or have worked in the industry, identified a gap, and pursued it.

They often have a long list of improvements to address, and, often, they aren’t performing well financially. Their reimbursement processes are a little murky, and this uncertainty might increase in 2025.

How much time do they have to integrate innovations that don’t directly impact their outcomes, quality, access or bottom line? Because everything’s being looked at in that piece.

We need to understand that the situation changes as the market evolves. What is the critical point where innovation intersects with standard operating procedures, and what does it look like? How can information from one area influence the other? We must determine how to identify the good and the bad and how to present them to the market.

What happens at the global conference? What happens in chapter meetings? What happens in the papers that are submitted? What happens in the insights? Much of this depends on how these elements connect.

Bashe: Many diverse health information communities come together yearly at HIMSS. You have consistently made this gathering relevant. This year, a new startup section called Emerge addresses a critical need within the HIMSS community. You just started with the story about a startup enterprise. Could you share some important and innovative aspects that will be highlighted at this year’s gathering?

Wolf: That’s a pressing question, so I’ll divide it into multiple parts because it’s challenging.

We’re part of the industry, so let’s return to your original premises to find the answer. You mentioned “competing,” which refers to people competing against each other. However, you also have specific points of interest to consider.

The benefit engine can determine how much money you’ll receive in reimbursement for a particular service. However, if you’re on the insurance or payer side, the configuration may depend on whether it’s for North America or a Ministry of Health. Here, the goal is to anticipate the costs incurred in treating a patient. This perspective aligns with an actuarial professional trying to understand and guide the process forward.

I’ve observed hospital systems are starting to integrate AI functionalities, but currently, only 5 to 7% are using it effectively, from an operational standpoint,

For example, when someone walks to the front desk and says their right arm is hurting, the staff collects the information by typing it into a form. They ask a couple of questions, such as “Who’s your primary care doctor? Who’s your insurance company? Are you on managed care? Is this new? What other ailments do you have? What other prescriptions do you have?” They must ask those questions if they don’t have that information readily available. That data feeds into new algorithms on the AI side.

In the background, AI analyzes the information and makes predictive models about how long this person would be in the hospital, what resources they will consume, and how much revenue it will generate. It’s occurring in the background, without the front desk staff being aware of AI’s calculations; meanwhile, the administrator is beginning to recognize the impact of these advancements. The inbound process begins with appropriate testing, questioning, and, if necessary, into a bed.

Meanwhile, the hospital administrator or the system managing the situation assesses the resources the patient will need, whether they will need a specialist and whether the specialist will be available when needed. By the time an exam takes place, they can inform the patient about what to expect in the next 24 to 48 hours, whether they will be staying at the hospital or going home. This preparation and communication represent the positive aspects of the process.  

The dark side is that the hospital engine in the background might say, “We’re not going to get a lot of money out of this. This is not a good use of our beds/time. If we maximize profits, we should send this person on and see what the next person will bring because our algorithm told us that five people would come in with congestive heart failure, and we do make money on that.”

The person writing this down may never realize what is happening; they won’t know that the system will indicate that the hospital is full, even though there might be capacity. Instead, they will tell the person to go down the street to Acme Community Hospital, which can take care of them, explaining that their system lacks resources. That is a dark coin flip to what could happen.

Bashe: Many hospital networks are acquiring primary care practices as feeder systems in their facilities. For example, if a patient is told, “You need to do a cardiac stress test. Do you have a cardiologist?” and they respond with “No?” the primary care provider can then say, “Why don’t you let me arrange that for you.” The primary care satellite site is closing the loop on a fragmented system. While the hospital system benefits economically from the service, patients benefit, and the primary care satellite site serves as a conduit for care.

I’m always thinking about the benefits of technology in enhancing the hospital and primary care systems. Imagine a doctor saying, “You know, you’ll have many questions. I will be here to help you frame your thinking around those questions. Our system has an LLM model. Let’s call it Dr. Hal. You can ask Dr. Hal every question regarding your congestive heart failure or prostate cancer. Dr. Hal is the composite wisdom of all the experts in our system and is here to address your questions.”

The creative aspect of our discipline, combined with information, is becoming a superpower. We use data to guide our supply chain resourcing and leverage information to promptly provide patients with confidence and comfort. We ensure greater access to accurate information vetted by the system, so patients do not depend solely on Dr. Google.

Wolf: The actual value of AI is knowledge management. It allows a very broad and capable synthesis of vast amounts of data and information that no human can keep up with. For example, in the 1970s, clinicians had access to three to four journals, where editors picked what was important enough to be published. These journals had to be printed and mailed out, resulting in about 400 peer-reviewed articles per year reaching healthcare professionals. If you read one a day, you could keep up. Today, more than 10,000 articles will be published this year alone. All that information, knowledge management, and sharing will occur collaboratively, and there is no way for anyone to synthesize all that.

AI plays a crucial role in operational and clinical decision support by turning information into knowledge, with recommendations that lead to changes in operations, suggestions, and care.

In clinical care, pharmacy, or whatever path you’re on, these recommendations are communicated back to physicians with an explanation of why they are a recommendation and the source of that information.

I think part of the maturity that we’re seeing, and you’ll see at HIMSS 2025, is the evolution of AI since our session three years ago. Back then, we held a session titled, “What is AI, and what does it mean?” The panel discussed its potential application in healthcare, and at that time, chat had just been introduced, and people were starting to look at it. Some people were on stage calling for a six-month hiatus before we allowed anything to go forward.

Last year, we saw glimpses of initial uses of AI being deployed operationally, albeit only in a few hospital systems. But it was beginning to happen, and we knew that AI was in the background of devices or operational considerations. Where would the benefit engines come from? The algorithms were starting to be built, and we had a particular point of looking out for biases. We started talking about biases within AI and realized that no matter what you do, there will always be some biases. It’s unavoidable. What was the source information for AI, and how do I ensure I utilize it to the best of my ability?

You’ll see the presentation of how people are using it on a scale. What are examples of its success, and what are some of its limitations? Numerous applications are set to emerge. You’re going to see them on the floor, where people are using components of AI in the background to produce better products that are more efficient and can guide operations as well as at-home care, and all those pieces are being brought forward. The common link between it and your point is on the information side of the house. How good is the starting information, and how broad does it go? Where is the opportunity from a linking standpoint?

To achieve this, a private-public partnership is essential. If you’re looking at algorithms and information that utilize global data that gets turned into global information, it has an impact. Most healthcare systems around the globe are publicly held. They’re not privately held. The United States is an aberration due to its vast amounts of privately held institutions versus publicly held ones.

Bashe:  Are you seeing more of that regarding the technology being used proactively?

Wolf: Yes, and that’s a good thing. We’ve always wanted to see that proper reimbursement takes place and proper services rendered. Many things in a system can get missed, but not an overwhelming amount.  If hospital systems perform well, they typically operate on a 2 percent to three percent margin, but many run at a loss, making proper reimbursements difficult. Large actuarial departments played a key role in the past, with various organizations providing revenue support, which was a huge thing even 15 years ago. However, over time, those efforts began to converge.

The real opportunity lies beneath the surface. It must coincide with an understanding of the care that was delivered. Right next to that benefit realization is the value proposition. What was the quality of what was rendered? Was the care appropriately given? Did we miss something in the diagnosis?

Bashe: One of the things that I worry about is not New York City or Los Angeles. Medical centers such as Mount Sinai, NYU Langone, Weil-Cornell, Columbia Presbyterian, and Memorial Sloan Kettering, much like their counterparts in Boston, Chicago, and the Bay area, provide excellent care. However, in rural America, someone can live three hours from a tertiary care center.

Your approach of using information to improve the care of almost 29 percent of the US population applies, I think, to other nations where people live far from centers of excellence. What are your thoughts about devices, wearables, remote patient monitoring and information, and protecting the information from your standpoint?

Wolf:  Wearables and home monitoring have transformed patient engagement, making health data more immediate and actionable. It’s fascinating. My wife and I compare our Oura daily. How did you sleep? How’s your heart rhythm? We’re finding the features and working through them. She lives anonymously. We are very engaged in our health. How far did we walk? What was our heart rate? Let’s do the 6-minute walk today and see. Were you snoring last night?

All of that is going on, and that’s an engagement level. The information flows from me to my ring, and then my ring says, do you want to share it with Apple? I said yes, and my wife said no; she didn’t want it to flow to another company. Apple will know how well I sleep – I don’t worry about it. If they want to dive into it, there is a profile about me and my general health. They could also derive that from the stuff I buy and the credit card information. That’s always been the case.

If you remember, back in the 1980s, we were already using demographic data with Donnelly overlays. I worked for Time Warner in the early 1990s when Time magazines were delivered to your door. The Time magazine that arrived at your next-door neighbor was different from yours—not the content, but the cover and the ads in the back. You may have gotten an ad for a sports car, and your neighbor may have gotten one for a minivan.

It was specifically designed based on the Donnelly reports, which provided insights about the household. We’re starting to shape recommendations at the personal level of the care an individual should receive.

Why wouldn’t a physician or a clinician want every piece of information on this Oura ring to be included in a patient’s profile? This information would help complete the picture needed to utilize sophisticated knowledge management systems, tapping into tens of thousands of research papers and combining that data with the person’s unique health details. The richer that information becomes, the more accurate it becomes, the more mistakes it makes, the more positively it helps the next person.

Bashe: Often, when I speak to doctors and nurses in the health system, we talk about the Electronic Medical Record (EMR). They’re candid: “We have an EMR system—it’s not perfect, we know that, and it’s getting better and better.” Yet, they often say, “Did you read that patient’s EMR data?” and then they’ll say, “I don’t have time to read the EMR.” While best practices come from committees, you play a unique role as an advisor to corporations. You’re the sounding board for major corporations, whether AWS, Epic, Microsoft, or Oracle. I’m sure they will listen to you because you’re the voice of the global community.

Wolf: We don’t have a dog in the race against them as a competitor.

Bashe: As a not-for-profit society that operates at a global NGO level, when you look at your role and the challenges you face, how does HIMSS address constant sector transformation? HIMSS and its members are constantly evolving because you represent applied information. The system is getting more interesting and more creative.

Look at the challenges that HIMSS owns and represents and your mission, which is obviously to improve access to care. As the organization’s leader, you’re clear and committed to this role, but you’ve seen difficulties implementing cultural or systemic changes.

What’s your guidance for the community? Please don’t take out a ruler and slap people on their hands. You’re obviously about supporting the system’s evolution, making it better. Can you share insights on how you’re filtering down best practices within this evolving landscape? How do you reflect on these challenges that arise and guide systems to understand that care is delivered to the front lines and is not always in hospitals? It’s specialists or primary care—physicians in their little offices worldwide.

Wolf: This is precisely what we discuss daily at HIMSS, and it’s central to our global work. Let’s walk through our view of the ecosystem and how we influence what you just related to because it’s our core.

Hospital systems – or, more importantly, governments worldwide – including our own, recognize their fundamental responsibility to care for their populations. Let’s set the United States aside for a second.

Ministries of Health in countries around the world are accountable for the well-being of their citizens. We’ll talk about citizens for a minute. The people living within their country want a healthy population, which improves the economy. They’re smart enough to know that a healthier population, or one cared for, efficiently reduces the constant increase in costs within healthcare systems. No one is looking to save money; instead, the goal is to slow the escalating costs of healthcare systems, which seem to rise every year.  

Information is the driver behind everything, but to your point, the combination of people, processes, and technology shapes the outcome. Technology is rarely an issue here; the challenge lies in implementing and changing culture. The pandemic forced a significant global cultural change, and while it may seem that it’s deeply in our rear-view mirror, its impact is still felt. Telemedicine, the idea of using information, and the idea of remote care to alleviate the pressures on the front line became a standard feature, and people recognize that.

We see the impact in our relationships with organizations like the WHO in Europe. Take Romania, for example, where we just signed an agreement to help them develop a strategic plan to deliver digital health transformation. HIMSS is focused on four major points.

1. First is digital health transformation.
2. Second is the deployment and utilization of AI as a tool.
3. Third is cyber security to protect that information and ensure that it works for the betterment of their ecosystem with less hassle.
4. Fourth is workforce development, which trains people to understand these tools before they can utilize them to their fullest extent.

Those are our four main areas. When we think about digital health transformation, we start with the HIMSS maturity models from five to seven years ago.

Back then, our maturity models were a checklist of technology. Do you have that technology? Are you wired? That used to be the baseline, what we now consider table stakes. It’s not table stakes anymore.

We’ve transformed our maturity models to reflect quality, access, correctness, and fundamental value. How are you using the information? How does it improve the flow?

From an IT standpoint, we began looking at our maturity models like a stack. It starts with the information layer. What does the infrastructure look like? How is it laid out? How does your data need to be laid out? Where does the electronic medical record go on top of that? How do those two pieces feed into each other? How do you utilize the radiology and the pictures that are in there? How does that flow? What’s your analytical layer? How does this work?

Where are you getting your information, and how are you handling your analytics? How does that tie itself back into the infrastructure? How does that information flow from your reporting back into your EMR and the data layer? How does that data layer tie in when discussing the imaging ecosystem? What’s your continuity of care, the CCMM? How does it flow across the board to ensure you’re not dropping a patient?

We’ve created a stack of maturity models that form the foundation of how information flows from the patient across hospitals, clinics, and homes, wherever the case is provided, to ensure you can keep up with them. And we present these maturity models not just as a technology checklist. Anyone can do that—it’s not meaningless—but anyone can do that. The true focus is on how you use these technologies.

How do you ensure that the relationship between the patient and pharmacy utilization, as well as the benefit realization, is maintained? And how does all this tie together?

Whether it’s community service, a hospital system, or a home, what we’ve created in those stacks is a blueprint that any hospital system, country, or large-scale region can use to identify the technology needed and deploy it for its maximum benefit. 

People do assessments in hospital systems. For HIMSS members in the United States, these assessments are part of the membership, allowing them unlimited access to evaluate their systems. They can conduct these assessments online, check their status, and aim for levels 6 and 7, which is when all those benefits kick in. That’s when we do our validations.

We also do white papers, thought leadership, and HIMSS events, panels and educational programs. More than 300 academic programs are coming up at HIMSS in 2025, with more than 150 offering CE credits.

But these experiences are all based on the output, what worked, and what didn’t work. As you know, learning from others’ mistakes is just as valuable as learning from their successes. Some of the most impactful lessons come from those who try something, fail, and then fix it.

That’s where HIMSS and advisory services come in. We’re presenting the aggregated global knowledge of what’s working and what isn’t.

Most ecosystems don’t work the same way the United States does because most don’t have the same amount of money invested in it. We draw from many healthcare systems- from the U.S., to Romania, Italy, Germany, Singapore, Indonesia, Malaysia and Australia. We learn from all these countries, bring it together in our membership, and figure out what we have learned. How does it impact the models? We do these reviews in a constant session. That’s how we make the society work.

Bashe: It’s a brilliant use of human capital and composite wisdom. As we’re gearing toward the end of our conversation, I wanted to ask you about the Emerge Innovation Experience– this is a first-time gathering, but the concept of start-ups at HIMSS is nothing new. What’s different now is that you’ve recognized that start-ups are a unique culture with unique needs. You’ve assembled a cohort of leaders dedicated to helping these start-ups succeed. What are your expectations from Emerge?

Wolf: First, I’m very interested in the outcome of Emerge. This is the first time that we’re going to try to bring that mesh point I mentioned earlier, where innovations meet operations. They’ve chosen some excellent examples of what can come forward. I think it’s got the right practicality and innovative forethought. From what I’ve heard from people involved in it and talking to people on the committee, I’ve listened to everything from “Wow! This is fantastic and very innovative!” to “It could have been stronger.”

If I talk to heavy innovator startups, they reply that it doesn’t go far enough and could be really “wow.” Meanwhile, those focused on operations often reply that it’s “really pushing the edge.” What that tells me is that it’s in the right mesh point.

What I’m curious to see is how it is received. Many smart people have been working on it, focusing on what will have the biggest impact on operations and be ready for prime time tomorrow, especially in areas like AI utilization and operational impact. What is one step beyond? We also have an incubator ecosystem there.

The Emerge Innovation Experience will be unique, and I look forward to that outcome.

Bashe: I always value your candor.

Wolf: Sometimes, I can get criticized for it, but I believe in absolute transparency. The beautiful part about thought leadership is that we share these thoughts, which makes HIMSS thrive. Transparency is a strength in a positive society. If we’re not transparent with each other, we can’t advance. My grandfather taught me a long time ago that the three most essential phrases in business are “I don’t know, I’ll find out, and I’ll get back to you.” “I don’t know” is critically important.

What’s beautiful about healthcare is that you learn something new every day. It’s impossible to be in the health sector without learning something new every day unless you don’t ask a single question, read nothing, or stay in a room and shut the door.  

Just today, I learned something about HIMSS. I didn’t know because I was asking about a process. A question was raised, and I followed the thread through the organization and found one I’d never seen before, which was exciting.

I appreciate the philosophical and real questions you’re asking. We’re excited about HIMSS 2025 and the learning opportunities it will offer. It’s also about the big picture of what’s happening globally. We call it the Global Conference because it brings together Ministries of Health and NGOs worldwide. It all comes together. This is our largest membership meeting, and we’re thrilled that there’s at least a 35% increase in people signing up for HIMSS membership compared to last year.

Bashe: I’ll be attending this year. As always, thank you for the in-depth exchange. *****

In this insightful conversation, Hal Wolf, President and CEO of HIMSS, explores the critical forces shaping the sector’s future. As industry and governments navigate a rapidly evolving policy landscape under a new administration’s eyes, hospital systems, startups and policymakers must adapt to changing regulations, funding challenges, and digital transformation. Wolf highlights HIMSS’ role as a global leader in uniting a diverse ecosystem to advance health equity, interoperability, and patient-centered care.

A key theme of the discussion is how data and AI are transforming payer, provider and product innovation operations – how information can improve people’s lives. Wolf explains how AI-driven predictive models are integrated to optimize patient care and resource allocation. However, he also warns of ethical concerns—such as the potential for financial-driven decision-making that could prioritize revenue over patient needs. HIMSS plays a vital role in ensuring there is a balance between digital health innovation aligns with quality care and equitable access.

As digital tools, AI, and large language models (LLMs) become more integrated into healthcare, Wolf and Bashe discuss how these advancements can empower providers and patient-enhancing decision-making, improving operational efficiency and offering trusted, system-vetted health information.

As HIMSS prepares for its annual global conference, Wolf emphasizes its role in shaping industry priorities. HIMSS is not just an event; it’s a society that defines strategies, policies, and innovations that drive the future of health. With an expanding ecosystem of startups and industry veterans, HIMSS remains a pivotal force in bridging technology, policy and patient care.

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Understanding Medical Consent Forms

Medical consent forms provide information about a medical procedure or treatment, including its risks, benefits, and other options. They prove that the patient has been properly informed and consented to the procedure. However, patients may change these forms according to their needs and concerns. There is no mandate that you sign the form as it is.

Editing Consent Forms

Patients can remove certain parts of a medical consent form by clearly stating their preferences. They can cross out, delete the sections they don’t agree with, or add a note explaining the changes they want. Patients must clearly express their preferences and ensure the updated form accurately reflects their wishes.

Legal Considerations

When changing medical consent forms, patients must consider the legal aspects involved. Healthcare providers may decline a procedure if they believe the changes made by the patient could affect the quality of care or their safety. Patients need to understand that altering a consent form might limit their options if something goes wrong during the procedure. For example, if you delete the part about videotaping, you might need such evidence in the future if there is an issue.

Validity and Duration of Consent Forms

The validity and duration of medical consent forms can vary based on the specific situation. Typically, these forms are valid for the duration of the treatment or procedure they were meant for. Remember, there might be exceptions, such as if the patient’s condition changes significantly or if new information about the procedure comes up.

Medical consent forms ensure patients comprehend the risks and benefits of procedures. Patients can modify these forms, such as choosing not to be recorded or photographed or giving consent for healthcare providers to use their information for projects.

Yet, it’s important to consider all aspects and for patients to consider the consequences of changing consent forms. But, also, don’t be rushed into not reading the form completely because they are waiting for you in the procedure room. You could sign to be included in a research protocol that is not your intention.

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Your data is worth money, a lot of money. And while it might not be immediately apparent how or why companies are mining your data, it’s important to understand that it happens. A lot. You probably agree to it happening every time you click “I Agree” on a website’s Terms and Conditions page. But what exactly are you agreeing to?

Most people assume that when they’re using a free service like Facebook, Google, or Instagram, the company is making money off of ads. And while that is true to some extent, these companies are also making money by selling your data. That’s right, your data is being bought and sold regularly without your knowledge or overt consent. Interestingly, healthcare data is among the most valuable data in the world. It’s been suggested that health data may be worth fifty times as much as personal financial data. And the richest part of your data set might be your DNA.

Ultima Genomics, a new player in the genomic sequence business, announced $600 million in funding and a $100 cost for full genomic sequencing. Here’s the wording from their press release.

Today Ultima Genomics emerged from stealth mode with a new high-throughput, low-cost sequencing platform that delivers the $100 genome. Ultima’s goal is to unleash a new era in genomics-driven research and healthcare, and it has secured approximately $600 million in backing from leading investors who share this vision.

Let’s talk about the one hundred bucks, but first, add a few zeros. The original approximated cost to sequence the entire human genome was about $1,000,000,000. Over time, these costs have followed almost an exponential path downward. Before these latest technological and pricing innovations from Ultima, the going price for a full analysis was about $1,000. The new $100 cost sets a trajectory that raises a critical question.

Will the cost to sequence a full human genome go to zero?

This is not a frivolous question. The implications are staggering. If the cost of sequencing a full genome plummets to zero, it will open up a new era of personalized medicine and health care. It will also have profound implications for research and our understanding of the human body. And even at $100, the application of genomics to vast areas — from agriculture to medicine — is transformative.

But there is another side to this equation. As genomics becomes more ubiquitous, so does the collection and analysis of our DNA. And with that comes a new set of ethical considerations. When we sequence our DNA, we are essentially giving away our most personal information. This information can be used to diagnose disease, predict disease risk, and even determine paternity. It can also be used to make decisions about insurance coverage and employment. Further, the claims of “depersonalization and deidentification” become much more opaque as these data are in fact, self-identifying.

Call it a Faustian bargain, Pandora’s Box or even the myth of Icarus, our DNA offers secrets to science and business that is becoming increasingly difficult to resist. And that irresistibility may provide us all with critical insights to the path that lies ahead.

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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.

Healthcare ethnography can help your hospital to discover front-line insights to transform patient care and the patient experience and save money.

In some places, outdated industry standards have become ritualized. A proactive approach to innovation and improvement is not always possible for hospital staff immersed in their daily routines.

Ethnography offers your hospital a solution to achieve and maintain operational efficiency in what is often a disruptive healthcare environment.

What is Ethnography?

Ethnography studies the culture and habits of people in specific situations. In healthcare, it can be applied to:

• Explain discrepancies between what patients say and what they do.
• Identify needs that people can’t articulate explicitly.
• Describe both usage and meaning of healthcare services.
• Put a human face on market data through real-life stories.
• Evaluate current products or services or create brand new ones.
• Help collect and organize multiple viewpoints and represent patients in an unbiased manner.
• Directly provide patient models that can quickly generate many good ideas.

Gaining front line insights from the viewpoint of patients, their families, and carers is essential to improve the quality of patient care. Our ethnographers use this qualitative research methodology to understand how to improve individual departments within your hospital, leading to greater patient and family satisfaction. The care coordination within a bundled payment model is also enhanced.

Our holistic approach involves gathering subjective insights to accompany data analytics and equip your hospital with the tools it needs for continuous innovation and improvement.

Our Process

The first part of the process is to illustrate a Patient Journey Map™ to identify existing challenges within your hospital. Our experienced ethnographers then collaborate with your team to create sustainable solutions.

One pathway to this process (VIE Healthcare), is to adopt a holistic approach that engages employees, patients, and their families by examining and analyzing their behaviors, attitudes and emotions.

The result is the discovery of valuable front line insights to empower your organization with opportunities that innovate and improve products and services to meet those needs.

Our team of ethnographers can uncover and solve hidden, complex issues in the delivery of your care and operational performances across your hospital, which can result in millions of dollars in lost revenue.
Our process involves:

• Engagement with, and interviewing your employees, allowing them to contribute individual insights and ideas. This helps us to recommend improvements and enhance patient care.
• Shadowing surgical cases from the front line to observe the decision-making process and staff performance. This gives us the insight to identify inefficiencies or areas where shortcuts are made often due to a lack of effective training or awareness of regulations.

Benefits of Ethnography in Healthcare

In summary, ethnography offers numerous benefits in your hospital, including:

• Target the actual needs of patients and families, saving valuable time and resources.
• Identify process improvements that have a tangible effect on your staff’s daily activities.
• Improve staff satisfaction by allowing them to be heard and addressing their needs.
• Redesign care through a collaborative approach for patients, families and staff.
• Multi-disciplinary care coordination throughout the care continuum.
• Improve patient satisfaction scores that directly impact bundle payments and reimbursement.
• Transform the patient experience.
• Reduce your hospital purchased costs.

Ethnography for Exceptional Patient Care

The insights we discover during our analysis reveal the unspoken needs of your patients and families to transform the patient experience and deliver a smoother patient journey through your organizational boundaries.

Our insights reduce errors, duplications and delays often experienced during processes such as “hand-offs.”

The result is improved health outcomes and a more enriching experience for patients and their families, positioning your hospital as a thought leader in the healthcare sector. As value-based care comes to the forefront, it becomes an essential part of driving margin improvement for the survival of your hospital.

The post Healthcare Ethnography: Discover Front Line Hospital Insights appeared first on Medika Life.