Rare disease treatment is characterized by its numerous challenges, stemming from an overall lack of awareness across the healthcare landscape. This issue becomes a waterfall, trickling down and affecting crucial nodes of the healthcare value chain, such as regulations, existing healthcare infrastructure, and affordability, before it can even potentially reach patients. Hence, the cooperation of the public and private sectors with a firm basis in knowledge sharing and education is required to alleviate these multifaceted challenges brought from a lack of awareness.

The Root of Awareness  

Rare diseases are defined by their generally low population impact, with many markets agreeing to a ratioed figure, such as one patient per every 2,000 in a population. The rarity of such diseases results in a lack of awareness among both the general public and the healthcare practitioner community. This awareness gap translates into a significant challenge in patients receiving an accurate diagnosis. Combined with the relatively few specialized medical personnel for such diseases, this can lead to misdiagnosis or delayed referrals, resulting in an average time to receive a final diagnosis of up to 5 years. By this time, some rare diseases can cause significant distress, such as Leber hereditary optic neuropathy (LHON), which can cause vision loss in a matter of months if left untreated.

Patients face a journey of medical uncertainty, fiscal difficulties, and personal challenges. These issues are often exacerbated by healthcare systems that struggle to accurately and promptly diagnose such rare conditions.

Point-to-Point Hurdles in Medication Access

Across markets, the rare disease medication issue also has to contend with more tangible and operational concerns stemming from the lack of awareness. From a regulatory standpoint, the lack of rare disease understanding can lead to regulations being under equipped to address medication access. This is doubly so for more challenging regulatory landscapes, such as across APAC’s complex and fragmented market environment, where general healthcare accessibility can already prove to be a hurdle due to a combination of socioeconomic and geopolitical factors. This can lead rare diseases and their medications to be an underserved area, while more widely common health concerns are prioritized.

A key driver of healthcare access is the underlying infrastructure powering the supply chain, ensuring the distribution of medication to patients. Similar to regulations, supply chain systems can vary vastly in complexity, particularly when across challenging geography and when specialised logistics, such as cold chain solutions, are needed to handle sensitive medication. These can culminate in much-needed investment into supply chain infrastructure. For example, in APAC markets, such as Thailand, DKSH has established a network of satellite distribution centers that can provide last-mile delivery of sensitive medications to underserved areas in a short period of time.

Regulatory complexities and supply chain infrastructure aside, the barrier to rare disease medication accessibility most often felt by patients is the affordability of treatments. The high cost of rare disease treatment options is critical, with some reaching over a million dollars for annual or one-time treatment. The issue of cost is more amplified in regions like APAC, where many markets have less robust public health insurance or social support systems, placing a financial strain on patients, even when access is just within reach.

This collection of barriers to accessing rare disease medications can be daunting from the outset. As a challenge of global concern, addressing it requires a unified approach that combines in-market and industry expertise, all in service of bringing medication to underserved patients.

The Power of Collaboration

The unique challenges of rare diseases are too great for any single entity to tackle alone. Bridging this gap through collaboration is paving the way forward, with public-private partnerships (PPPs) emerging as a core means for success. These partnerships bring together government agencies, pharmaceutical companies, academic institutions, and patient advocacy groups to share expertise, resources, and risk. For instance, in the APAC region, initiatives like the APEC Action Plan on Rare Diseases have provided a framework for member economies to accelerate efforts in this area, including the promotion of multisectoral collaborations. Regional alliances, such as the Asia Pacific Alliance for Rare Disease Organizations (APARDO), have done valuable work in collaborating with advocacy groups to raise awareness about these conditions. On an organizational level, there are also healthcare partners, such as DKSH, who work with firms, such as Kyowa Kirin, to bring rare disease medications to markets by utilizing in-market and regulatory expertise. Moreover, DKSH’s local teams have strong market knowledge, enabling them to offer clients and customers expert advice on local regulation.

This collaborative approach is crucial for streamlining the regulatory process for rare disease medications, also known as orphan drugs. Governments, including many in Asia, have introduced specific regulations and incentives to encourage the development of rare disease medication. These include Orphan Drug Designations (ODD) that provide much-needed support, such as tax credits for clinical research. Beyond these incentives, regulatory bodies are considering a greater reliance on evidence from expanded access programs. This allows for the use of data from a smaller patient pool, which is often the only available source of information for such rare conditions, thereby accelerating the review and approval process.

From a patient perspective, financial aid is of vital importance and an area where collaboration is key. The high cost of treatments for rare diseases necessitates innovative funding models beyond traditional public insurance. One effective model gaining traction in APAC is the establishment of dedicated funds, supported by a combination of public and private contributions. Singapore’s Rare Disease Fund (RDF) is a prime example, where community donations are matched by the government at a significant ratio. This model provides long-term financial support for patients, while encouraging a sense of shared responsibility across society. Similarly, patient access schemes and managed access programs are being implemented to ensure affordability and controlled access to therapies before full reimbursement is in place. These schemes can be tailored to individual patient needs and help bridge the gap between regulatory approval and widespread access.

Ultimately, the future of rare disease medication accessibility rests on a unified, multi-stakeholder ecosystem. By building on collaborative frameworks, optimizing regulatory pathways, and pioneering innovative funding mechanisms, the healthcare landscape can be transformed. Beyond raising awareness, there is an opportunity to create a robust, equitable, and sustainable system that ensures no patient is left behind, regardless of the rarity of their condition.

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A Conversation Without Borders

Among the diverse voices at the Forum were three standout attendees—one from Ghana, another from Brazil, and still another from India—all deeply committed to advancing scientific discovery and digital transformation in health, all sitting at one table coincidentally. Their presence reinforced the idea that innovation emerges not from a single system or nation but from a mosaic of lived experiences, cultural insight, and shared human purpose.

At a time when geopolitical divisions grow and xenophobic rhetoric clouds practical need, this convening of minds from across continents stands as a counterpoint: progress in medicine and public health demands openness, not isolation.

Today, two out of five HIMSS members live outside the United States, representing the tremendous growth in its international reach.

Global Minds and Shared Missions

Consider the stories behind some of the most transformative scientific breakthroughs. Dr. Tu Youyou, who drew upon traditional Chinese medicine to isolate artemisinin, reshaped malaria treatment and saved millions. Tu received the 2011 Lasker Award in clinical medicine and the 2015 Nobel Prize in Physiology or Medicine jointly with William C. Campbell and Satoshi Ōmura for her work.

Dr. Salvador Moncada, born in Honduras and later based in the UK, changed the future of cardiovascular medicine through his work on nitric oxide. And Dr. Pardis Sabeti, born in Iran and raised in the United States, played a critical role in genomic tracking during the West African Ebola outbreak. These are not anomalies—they are the natural result of cross-border learning and purpose-driven science. In recognition of his tapping into the power of collaboration to accelerate biomedical discoveries, Dr. Salvador was nominated by the President of Honduras to serve as the country’s first Ambassador to China. 

Such examples underscore a larger point: global health challenges—from infectious disease to chronic illness—cannot be solved in silos. They require knowledge sharing, inclusive research, and the integration of clinical science, population health data, and epidemiological insights gathered across geographies. HIMSS is paving the way for people and countries to come together.

Today, health information flows freely across continents. Clinical trials are increasingly multinational. Genomic datasets used to train AI models include samples from diverse populations. Epidemiological patterns—from outbreaks to noncommunicable disease trends—are informed by data from regions that span income levels and infrastructure capacity. This global interconnectedness of knowledge is not only valuable—it is vital.

Health innovation now depends as much on access to ideas and information as on access to raw data or funding. Each individual—whether a clinician, data scientist, policymaker, patient or communicator—contributes to this ecosystem through their choices within their workplace, organization, advocacy group and community. These local actions ripple outward to impact global outcomes.

When people are empowered to think boldly and act collaboratively—regardless of where they are from—their influence transcends borders. This is especially true in a world where diseases migrate, health inequities persist, and environmental factors increasingly shape population health. No one country has a monopoly on the future of medicine, and no one person is immune to illness.

Science and Technology as a Bridge

Science is not merely technical; it is relational. It is built on trust, transparency, and the willingness to share. When data is exchanged openly—on disease trends, therapeutic outcomes, or environmental health risks—it becomes a force for public good. When it is withheld or politicized, it delays solutions and costs lives.

As HIMSS convened global thinkers in a borough symbolic of reinvention, the message was clear: advancing AI in health is not just about algorithms—it’s about equity, empathy, and inclusion. Those values begin not with policy mandates but with people. Beneath sessions on technology and policies, the conversation continually returned to the reality—it’s about people working collaboratively.

Every organization has the power to foster a culture where global voices are welcomed, collaboration is incentivized, and ideas are judged not by origin but by merit. The future of health will be shaped by how willing we are to embrace human potential, wherever it begins, and work with people who can help advance human health wherever they call home.

Brooklyn as a Setting and Symbol

Brooklyn is a fitting backdrop for these conversations. A city defined by generations of immigrants—scientists, healers and visionaries—stands as a beacon for what is possible when people are welcomed, not walled off. HIMSS is hosting its APAC meeting July 16-18 in Malaysia.

The HIMSS AI in Healthcare Forum brought together technologists, clinicians, ethicists and entrepreneurs. But more than that, it reminds participants of something timeless: when diverse minds come together, knowledge is not only shared—it is elevated. When human potential is honored without prejudice, the possibilities for better health are limitless.

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A Changing Landscape: Opportunities in U.S.-India Health Ties

India’s rapidly evolving health sector and the U.S.’s unparalleled expertise in innovation and investment create a powerful synergy. India, already a global leader in pharmaceuticals, supplies 40% of generics to the U.S. and has emerged as a hub for cutting-edge manufacturing and research. Meanwhile, U.S. companies view India as a gateway to growth, with its burgeoning middle class, aging population of over 100 million, and a health market projected to reach $638 billion by 2025, growing at a 22% compound annual growth rate. The results of U.S. elections will directly influence health policies, including tariffs, trade agreements, and investment incentives, shaping the pace of collaboration between the two nations. Multinationals must navigate these shifts carefully, balancing policy changes with market potential.

Emerging Trends in the US-India Health Partnership

Reshaping the Pharmaceutical Supply Chain: With the U.S. increasing tariffs on Chinese imports and emphasizing domestic resilience, India has an unprecedented opportunity to fill the gap. Proposed legislation like the U.S. BIOSECURE Act positions India as a vital partner in contract manufacturing and research, doubling opportunities for Indian CDMOs and CROs. 

Incentivizing Innovation and Local Production: India’s Production Linked Incentive (PLI) and Make in India initiatives are revolutionizing domestic manufacturing. These schemes offer MNCs financial incentives to produce locally, reducing costs and enhancing access. U.S. companies like Pfizer and GSK have already capitalized on India’s pro-business policies, paving the way for others to follow.

Digital Health Revolution: India’s National Digital Health Mission and growing investments in telemedicine present lucrative opportunities for U.S. firms. Collaborating with India’s thriving tech ecosystem could help MNCs expand their digital health solutions, from AI-driven diagnostics to telehealth platforms, addressing unmet needs in rural and underserved markets.

Medical Devices as the Next Frontier: India’s recent ₹500 crore initiative to strengthen its medical devices sector aligns with U.S. expertise in advanced technologies. Partnerships in this space could make India a global exporter of high-quality medical devices, with MNCs playing a pivotal role in innovation and scale.

Why India is Unmissable for Multinationals

India’s health sector is undergoing a profound transformation, bolstered by government-led reforms and a favorable FDI regime. The allowance of 100% foreign direct investment through automatic routes in health and related sectors has already attracted global giants. Regulatory relaxations, such as waiving clinical trial requirements for drugs approved in select countries, make India an even more attractive destination for innovation. Additionally, India’s ambitious BIO-Ride Scheme aims to bridge the gap between research and commercialization, enhancing the country’s reputation as a biomanufacturing powerhouse. These developments, coupled with the expanding talent pool, provide multinationals with access to skilled professionals and cutting-edge research.

While the U.S.-India health partnership offers immense promise, challenges such as regulatory hurdles, intellectual property concerns, and geopolitical shifts must be addressed. Multinationals must adopt a strategic approach to align their goals with India’s priorities, from affordability to local capacity building. The future of health lies in the strength of the U.S.-India relationship. Together, the two nations can drive transformative change, addressing global health challenges through innovation, policy alignment, and mutual investment. Multinationals that recognize and act on this potential will not only unlock significant growth but also play a defining role in shaping the health landscape for generations.

As the post-election dust settles, one thing is clear: the U.S.-India health partnership is not just a bilateral opportunity—it’s a global imperative.

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But what happens when goods and services are priced beyond the reach of the average person? Pandemic-fueled unemployment and inflation, and looming electricity, food and water shortages caused by climate emergencies, have provided an unsettling reminder that the basic things many people depend on to live can become unaffordable.

For most Americans and their employers, however, one of the single greatest threats to prosperity – even survival – is the uncontrolled cost of healthcare. In the past 20 years, the cost of the average family insurance premium has increased twice as fast each year as the annual rate of wage growth. In real terms, the average American family in 2002 paid $7,954 for health insurance but saw that figure skyrocket to $22,463 last year. Within a couple of decades, the cost to insure a family could be three to four times higher if nothing changes.

To put perspective to that calculation, assuming wage growth remains the same, it will require one parent to work full time just to cover the cost of protecting their family’s health. For many American households, this already is the case. Left unchecked, healthcare costs will significantly constrain economic growth as employers pass on costs to consumers and curtail investments, while governments at every level see a decrease in tax revenues that would fund a range of essential programs.

This bleak outlook should force a reckoning for the global pharmaceutical industry. While health companies must remain profitable to continue to fuel innovation, maintaining business as usual cannot come at the expense of the very customers who depend on functional healthcare to prosper. Such a conundrum poses a unique opportunity for pharma companies to live up to the credo of truly putting patients first by redefining how they lead on areas that are fundamental to strengthening health access and affordability for the long term. Among the many ways to achieve this outcome, some areas stand out:

Fostering greater cross-industry collaboration

Contrary to the views of some policymakers, the solution to averting the worst-case scenario of pricing most Americans out of affordable healthcare is not to increase competition. A better path may be to create greater incentives for collaboration between industry peers and government agencies through all stages of the value chain, from early discovery through manufacturing to patient administration.

The Covid-19 pandemic illustrated how collaboration can deliver speed and scale during an emergency. But despite the active involvement of the National Institutes of Health (NIH) in sponsoring early research for the most successful vaccine candidates and heavy government intervention to waive or reduce the costs of vaccination in many countries, the success of intra-industry collaboration has been muted by headlines of windfall profits from vaccine sales.

While many pharmaceutical and biotechnology companies already participate in the NIH’s Accelerating Medicines Partnership (AMP), more can be done to use this program as a launch pad for cooperation among industry leaders. With greater funding for the AMP and a commitment by participating companies to leverage the partnership to deliver cost-effective therapeutics, we could see a groundswell of pioneering products that provide lifesaving benefits without bankrupting patients. Such a push would support specific companies in their efforts to strengthen reputation among a variety of audiences.

Using digital tools to deliver increased transparency

From the rapid growth of electronic health records to the increase in clinical trial management solutions, information technology has been fully integrated into nearly every aspect of the pharmaceutical industry. But how can the array of digital tools be used to benefit patients?

As the health industry faces ever greater scrutiny over soaring costs, leading companies could forge a different approach by leveraging the power of their IT and storytelling capabilities to provide patients, advocacy groups and policymakers with important details on the drug delivery process. By bringing R&D to life and engaging patients in the various facets of drug development, companies may be able to spark a new dialog with informed audiences about realistic ways to lower the costs of care and focus on therapeutics with the greatest potential for public benefit without sacrificing the profits that are necessary to support medical breakthroughs.

Achieving health access equity by innovating for all

More than two decades ago, Merck’s CEO at the time, Dr. Roy Vagelos, took the bold step of restricting the company’s drug prices to match inflation. Under his leadership, Merck made efforts to price its drugs according to the economic benefits to patients. Years later, Allergan CEO Brent Saunders announced a social contract to adhere to single-digit percentage increases no more than once a year.

Few would argue that Merck or Allergan set themselves up for failure by staking patient-first positions on cost management and drug pricing. In fact, Merck’s stock price rose 22% annually during the Vagelos years. The moves likely strengthened employee morale and public perception, while serving as reputational insurance for each company against future issues.

These examples – and others – show that there is a middle path to developing innovative products with patient access and affordability at the center. This is the foundation to supporting a level field in healthcare, where patients enjoy equitable care and the health ecosystem becomes more accessible and sustainable.

It’s easy for health leaders to look at the growing crisis and kick the can down the road. That’s the playbook oil companies employed when confronted with clear evidence that their actions were causing global warming and fueling a public health crisis. Alternatively, they can recognize the moral imperative to move quickly and stake out bold pipeline, communications and pricing strategies that put cost sustainability and equitable access to care squarely in the center of everything they do. It’s worked before; it can work again.

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With the rise of the COVID19 pandemic, many of us have an increasing volume of work interactions mediated through computer screens.

The workplace is changing: The National Bureau of Economic Research in the United States offers that when the pandemic comes to a close, 20 percent of workdays will be from home, compared with five percent in the per-COVID19 era.

I attended my institution’s multidisciplinary tumor board this morning. More than a dozen clinicians gather to review each patient’s management. Everyone puts eyes on the diagnostic images, pathology slides, and more. I think of tumor boards as collective intelligence.

But do we make better and more creative solutions face-to-face? This is my question today and one that thousands of businesses are asking themselves.

Now, Columbia University Business investigators provide some answers in a study recently published in Nature.

Virtual meetings and creativity

Melanie Brucks, of Columbia Business School (USA) and author of the study, recruited 602 people, including university students and staff.

She and her team divided the subjects by working in pairs, either virtually or in person. Assigned tasks included creating new uses for everyday items (such as bubble wrap), with each room having the same five items.

The researchers analyzed the performance of each pair in two ways:

• How many ideas did they create? And how novel and valuable did the ideas seem? For example, one could use a Frisbee to deliver a message. Using the frisbee as a hat? Not so creative. Student judges took charge of evaluating the ideas generated.
• Eye-tracking software.

Here are the findings: The eye-tracking software found that virtual subjects spent more time looking directly at their partner than gazing around the room.

In addition, the videoconferencing pairs remembered less about their surroundings than those meeting in person.

Speaking to CNN, postdoctoral scholar Jay Olson of McGill University (Canada) explains that people often look to their surroundings to help generate new ideas. I know that I do.

Virtual meetings and creativity in the real world

Yes, Michael, you offer. But what about outside of the artificial laboratory setting? Are in-person meetings truly better than virtual ones?

We get an answer in a larger research investigation, one looking at nearly 1,500 engineers working in five countries (in South Asia, the Middle East, and Europe) for a telecommunications infrastructure company.

Researchers randomly paired the subjects, assigning them to work face-to-face or through videoconferencing. The assignment? Create product ideas and select one to submit as a new product.

The real-world test yielded results similar to the laboratory ones, with the field study showing the negative effects of videoconferencing on idea generation.

The field study did not show any videoconferencing-induced impairment of collaborative work. Generating ideas appeared easier in person, but critical evaluation of creative ideas (such as choosing the best idea of a set) did not appear impaired by the video approach.

Are virtual meetings bad for creativity?

The studies reviewed are illuminating but do not mean that videoconferencing is contraindicated regarding creative endeavors.

Common sense tells me that the type of creative task matters. I know that for some tasks, I am most creative working alone! Full disclosure: I’m not too fond of meetings that are not truly needed and want them to be agenda-driven and focused. Poorly-run meetings suck the life force out of me (and make me a bit grumpy). My bête noir.

Where I find face-to-face meetings particularly valuable is brainstorming sessions. In the studies reviewed, the number of additional ideas generated by the in-person group appeared small.

What say you?

The post Are Virtual Meetings Stifling Your Creativity? appeared first on Medika Life.

During the 1940s and 1950s, psychologist Muzafer Sherif and his colleagues. set up an experiment in a summer camp for boys. The purpose of the exercise was to examine whether or not two groups with different agendas could be brought together. In fact, Sherif did manage to show that by creating a common emergency, groups could be brought together to work toward a common end that would serve both of them.

Sherif’s experiment took place at Robbers Cave State Park. Parental permission was obtained to include 11 to 12-year-old boys in the project. Negative information was circulated regarding each group. The result was to create a sense of hostility between two groups. While one group saw themselves in a positive light, they viewed the other in a negative light.

In other words, each group could not imagine participating with the other group in any activity until Sherif created a perfect opportunity to test his hypothesis. What did he do?

Sheriff created what is known as superordinate goals. In other words, these were goals that both groups cared about and that each would work toward attaining. The basis of the hypothesis is realistic conflict theory, sometimes also called realistic group conflict theory. When there is competition for resources that both need and can be attained only through the two groups working together, the result is cooperation rather than competition.

Considered to be a landmark study in social psychology, the method has been. Criticized by some and, as much research has shown, there are always problems or issues that were overlooked or not resolved adequately. A critique of Sherif’s experiment is offered in “The Lost Boys” by Gina Perry.

Current Situations

Currently, there are issues in healthcare that involve serious conflict, aka vaccination for a number of potent viruses that are affecting us worldwide. How do we manage to enlist those who are opposed to vaccination in order to protect everyone? There is no doubt we are in an era where conflict resolution is of prime importance because life depends on how we resolve our issues.

Simply bringing people together to discuss the issue may not be sufficient. Research that examined the Robbers Cave Experiment and which incorporated the mixing of these groups, did not manage to achieve its goal adequately. However, we are not in the 1950s any longer, and there may be hope for thoughtful discussion regarding the benefits to all. Vaccination, social distancing, and personal care can mean health for all — or almost all.

We know that viruses, unless contained by steps we take. have an ability to constantly mutate and become more efficient at evading our immune system’s ability to ward them off. Once the virus is in the wild and poorly contained, it becomes even more potent. Those who spread it may be asymptomatic, making them even more dangerous to everyone.

What can we glean from this work and that of other social psychologists who may have completed useful work with groups? It is eminently clear that we don’t have to reinvent the wheel, but we do need to read any work that will assist us in engendering group cooperation on healthcare in particular. Who’s looking into the social psychology research now? Of course, artificial intelligence and even OpenAI.com might be useful in this worthwhile work, but who’s doing it?

I recall being at a major research institute where they were discussing a recent protocol. As I listened, it became clear to me that they were missing one point, the involvement of others with their subjects. Sherif forgot that fact, too. Yes, it turned out to be someone’s doctoral dissertation topic after that meeting.

Here’s another research project worthy of consideration. Write your projects out, researchers and postgraduate students, because this is a big one.

The post The Robber’s Cave May Save Us in Times of Extreme Turmoil appeared first on Medika Life.

Digital Health Interviews: Levi Shapiro and Ellie Hanson on Digital Health in Israel

This new episode of Digital Health, hosted by Ukrainian health innovation leader Alex Koshykov, focuses on the topic of digital health in Israel. Guests are mHealth Israel Founder Levi Shapiro and FINN Partners Partner Ellie Hanson. Together, they discuss the current situation in the digital health market in Israel, how government helps startups in their early stages, and what are the main differences between American and Israeli health systems.

Ellie provides a short intro to a marketing strategy for digital health startups while Levi gave lots of useful tips for startup founders.

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Not too long ago, our family joined the rare disease community. For years, our child exhibited a multitude of disconnected symptoms that all seemed to have different explanations, if they had explanations at all. The growing list included dizziness, rapid heart rate, stomach aches, rib pain, joint pain, unexpected dislocations, migraines and others.

Spider-Web-like Health Ecosystem

The symptoms accumulated, along with a cascade of specialist appointments, diagnostic tests and treatments. So did the hours of speaking – and negotiating – with our health insurance carrier. Along the way, we encountered all sorts of personalities in our spider-web-like health ecosystem, most compassionate and wanting to help our child, others bewildered or frustrated, and still others deaf to our worries and requests. The boldest and best among the health professionals we worked with were those willing to confess their uncertainty. In medicine, the response “I don’t know” is now an act of courage.

Fifty years ago, when modern medicine came of age, there were far fewer treatments for common, non-communicable diseases such as high blood pressure, cardiovascular diseases or mental illness. While medicine has become more advanced and specialized, it has also become increasingly fragmented. The important family physician – who should have sufficient time and compensation to coordinate care – is often out-of-the-loop as patients rush to a myriad of medical specialists – each hyper-focused on their piece of the biological puzzle.

Fee-for-service care disadvantages primary care medicine and a patient’s coordinated care.  This financial model may work for simple – in and out – cases, but when it comes to chronic illnesses, it does not. Add to that the complexity of electronic medical record systems with limited interoperability. Now, specialists face “telephone-game” obstacles to accessing colleagues’ clinical notes and diagnostic data for a shared patient.

Now, shift from common non-communicable diseases to needle-in-the-haystack conditions.  It’s baffling for patients, parents and providers.  Over time, doctors may even become frustrated with these patients. People with multiple, disparate symptoms with no “one pill to heal them all” are sometimes labeled problem patients owned by no one. In these circumstances, young female patients often experience gender bias and provider judgments that the puzzling symptoms must be “in their heads.”

Communication is Part of the Care

When you hear hoofbeats behind you, think horses, not zebras. As 14^th-Century theologian and philosopher William of Occam would suggest, the more common explanation is the correct diagnosis. But medical students – and the doctors they become – need to be careful not to develop a foolish consistency.  This is not the Middle Ages of Medicine.  It is the 21^st Century of miracle medicine where patients must have a voice.

While it is easier to treat confusing and contradictory symptoms than to ask why a patient is experiencing them, savvy doctors rely more on their patients’ collaboration to help them solve medical mysteries. Information, communication, and advocacy can build a bridge linking doctors and patients.

Traumatized by the Medical System

But, most often in healthcare, the gatekeepers – providers and payers – feel they know best. This overconfidence can quickly unravel in the face of the challenges of rare whack-a-mole diseases. Physicians trying to help feel helpless and grasp at straws when their initial diagnoses and treatments do not solve their patient’s problems. Over time, many patients are traumatized by a medical system that seeks to help, but is seen as fallible.  As different solutions are sought, the system pays more and more for that same patient over time. The patient’s underlying illness remains unaddressed. No one wins.

This two-decade journey to arrive at my child’s diagnosis (Ehlers Danlos Syndrome) has taught me several lessons.

• TEAM:  Any successes result from the passion of individuals —parents, physicians, payers or policymakers — who are determined to work together to find solutions and willing to listen.

• TECH:  Good health information begins to force our fragmented health system to converge around the patient. When data is accessible, artificial intelligence finds needle-in-a-haystack solutions, uniting the myriad of like cases so that health professionals can learn, engage, and arrive at answers sooner.  Physicians who also engage patients promptly through the EHR system are more than answering the questions of anxious patients; they demonstrate partnership in the care.

• TRUST: I have seen how critical advocacy is. As a health communicator, I have been fortunate to serve on the boards of organizations such as the American Academy of Pain Medicine Foundation, American Heart Association, Leukemia & Lymphoma Society, The Marfan Foundation and Let’s Win for Pancreatic Cancer, which unite healers and patients, and participate in the Centers for Medicare and Medicaid Part D Working Group: all great forums for accurate information that improve public health through informed decisions.

These lessons all point to passionate, informed collaboration as the key to restoring clarity and sanity to the fragmented health system and driving quality care for patients, whether they have common ailments or rare conditions. I integrate these lessons into my work to benefit clients and, most importantly, change the lives of the patients they serve.

Our family’s lives were changed by one cardiologist who dared to utter a simple sentence: “You need a team.” Her idea to put one together should not have been so revelatory, nor so atypical, but it was. She understood collaboration fundamentally and saw patients and their caregivers as her partners in healing.

Collaboration – Overused Word; Underused Strategy

For those whose work touches patient care and public health, I encourage you to collaborate, talk, and merge your experiences with others. Remember, this work directly touches people’s lives. This work makes a difference. Give thought to how you can bond with others to change the course of care. Collaboration is an often-overused word but is too often underplayed as a behavior.

I call on my readers and colleagues to look to the innovators of ideas, products and relationships and recognize that through collaboration with each other, we have an opportunity to recast the health ecosystem. Recognize that our work is a life-saving effort about being part of people’s transformational moments. And be courageous enough to know when you don’t know.  From there, we can begin the journey toward healing, together.

The post Looking for Zebras: Medical Mysteries and Transformational Patient Moments 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.

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In the Cold War era, the threat of mutually assured destruction was real as the United States and Soviet Union stared each other down, each with a finger on the red button that might launch their atomic arsenals. Though our frequent “survive the fallout” trips to the hallway, sitting facing the walls with little hands over our heads, felt protective, we soon realized we were being naïve.

Years ago, the red button was replaced with a red hotline between Washington and the Kremlin, making communication a preferred path over “mutual self-destruction.” Moving from an adversarial to a cooperative, albeit cool, relationship wasn’t far behind.

Today, healthcare innovators need to move from where they are to a red hotline in order to connect the leaders of our fractured ecosystem before we implode. We are feeling more frustrated. We recognize that the care we can provide is out of reach to those challenged by access obstacles. We all know that costs within therapeutic categories and procedures are mysterious and sometimes, when the bill arrives, eye-popping. But, these problems pale next to our inability to create medicines of significance at the speed needed. That’s reflective of a globally fragmented innovation engine. Simply, we are not communicating or collaborating at the speed necessary to keep disease at bay, costs down and people healthier longer.

Moonshots of all sorts are needed; some are being launched. We have desire to heal, and people are desperate to be healed, whether they face cancer, diabetes, heart disease, or genetic conditions. Dr. Eric Topol, author of the bestseller, “The Patient Will See You Now,” is right. Technology is more than information at our fingertips; it created the “now” expectation. “I want a car to appear at my doorstep, now!” “I want a book delivered, now!” “I want to see a doctor, now!” “I need a cure for my illness, now!”

Why can’t it be now? Sometimes, our desire for urgency cannot be matched by our knowledge about disease pathway or origin. Take Alzheimer’s. For decades, we studied the disease and pursued cures. We have spent billions on research in the lab and by the bedside. Yet, our progress in this category is still defined by what doesn’t work. Science is an arduous process at times, but these failures give us more and more insight and direction.

Yet, there is a bigger challenge we must confront beyond absence of knowledge or clinical paths pursued for naught; the threat of self-directed destruction from illnesses that we could overcome but fail to. We need to get our act together, working collaboratively across labs, companies, and geographies. To overcome some diseases, we need more cooperation and less competition.

Artificial intelligence (AI) or machine learning is enabling academic research centers, health insurance companies, and physician groups to amass and study patient types and data. It’s the magic of our brains operating at a faster pace, with purpose and ability, that can match data to physician and patient needs with precision medicine. It can help us anticipate what person with a specific tumor type might benefit from immunotherapy, or, if the person with frequent polyps requires more frequent colonoscopies to avoid preventable, but deadly colon cancer.

Can you imagine the greatest research teams and medical centers of our planet sharing their data for combined synthesis and analysis? What might be the output of that collaboration? It’s beginning, but is it fast enough? It’s not about science that’s beyond our reach. It’s about collaborative opportunity unrealized.

Just as the web enabled patients to mobilize into advocacy groups and share information, pushing the system to move faster, AI will eventually push us to overcome another obstacle. Our academic medical centers compete too often and guard their data to ensure credit for the next big idea and path to discovery. It’s the stuff that leads to the Nobel and Lasker Prizes, among others.

Big private and public grants head toward the front-runners’ labs. That leads to fragmentation of insight and delay in sharing big — moonshot like — insights. Can we break down those barriers?

The developed world does not lack resources, ideas, brilliance, or even data. But it’s also rife with structures and processes that impede rapid collaboration. We are rooted to older research models with placebo-controlled groups, reluctant to employ AI models that can replicate with synthetic control arm data to speed drug trials to their outcomes. We have companies and academic research teams sharing information at the endpoint of the discovery or trial effort instead of finding ways to learn from each other earlier and accelerate progress. It’s happening — but not fast enough.

Collaboration should not be confused with agreement. It is an untapped skill that Jon Katzenbach, author of the business bestseller, The Wisdom of Teams, cited as the effective path to exploit data and improve performance. However, collaboration — with wings spread wide — is necessary if we are going to optimize all our scientific achievements to develop cures.

Just as we work to protect people’s survival from external dangers, we must act with confidence and collaborate to overcome disease. We must harness data, talent and resources to work much faster across artificial lines we create through governments, corporations and academic centers — finding incentives to better serve the people we seek to heal. How do we begin?

We begin as global leaders did, staring each other down, each with a finger on the button, recognizing that it was never a solution for success. Innovation — brought forward faster and faster to the marketplace with costs pushed down, determined who would dominate. We now need to move quickly to communicate; it is the foundation of care for healers, and those seeking to be healed. The red button is now unchallenged disease. The solution is humanity realizing its survival is essential. Collaboration is the fuel that sustains moon missions.

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