With the cost of healthcare on the rise, it’s no surprise that players from across the health ecosystem are coming together to solve some of our biggest problems in terms of ensuring access to the right care at a reasonable price. That’s part of the work that Yousuf Zafar, MD has been focused on for the last several years.
It’s should also be no surprise that as leading thinkers like Dr. Zafar grapple with this thorny problem, that one of the tools fueling his research and spreading the results of his findings lies in social media.
Dr. Zafar is a GI Oncologist at DukeHealth and a health services researcher with a focus in improving care delivery for patients with advanced cancer. He has participated in multiple studies focusing on access to care, cost of care, and comparative effectiveness of care delivery between health systems. His primary area of interest is in the cost of cancer care with a special focus on its patient impact. His current work in this arena is focused on patient preferences regarding cost-related communication and decision-making.
Dr. Zafar was a very early adopter of twitter, having been active on the platform since 2007. “I use other platforms personally, but for professional purposes, twitter is definitely the best tool for me,” he told me in a brief interview yesterday. He’s been identified as one of the “Featured Voices” at the ASCO annual meeting in Chicago (#ASCO16), a good choice – the number of Dr. Zafar’s physician followers on twitter puts him in the 97th percentile of all US oncologists. He has been actively involved in the online backchannel of #ASCO16 this far. Below is a map of the physician-to-physician conversations on the first day of ASCO (June 3) – as you can see, Dr. Zafar’s twitter handle (@yzafar) is quite central to the conversation. [NOTE: Click up the number of nodes on the chart to see the full conversation; it’s even more dramatic when you “zoom out.”
That active involvement has resulted in additional visibility for Dr. Zafar and his work – and bringing increasing attention to the issues around healthcare costs is really important to him. “One of the things that has been great to see at ASCO is that we’ve not only been using social media to help connect physicians to the latest research, but also to help patients relate their own stories and experiences to that research,” says Dr. Zafar. In fact, Dr. Zafar tends to learn as much from patients and their experiences as they do from him. “It’s really tough for a clinician who typically only has a few minutes with a patient to truly understand all of the issues associated with their broader experience of care.” Social media has helped to fill that gap.
In one of Dr. Zafar’s abstracts, he summarizes the situation in a very powerful way:
“Long-term solutions must focus on policy changes to reduce unsustainable drug prices and promote innovative insurance models. In the mean time, patients continue to struggle with high out-of-pocket costs. For more immediate solutions, we should look to the oncologist and patient. Oncologists should focus on the value of care delivered, encourage patient engagement on the topic of costs, and be better educated on financial resources available to patients. For their part, patients need improved cost-related health literacy so they are aware of potential costs and resources, and research should focus on how patients define high-value care. With a growing list of financial side effects induced by cancer treatment, the time has come to intervene on the “financial toxicity” of cancer care.”
That shared responsibility for driving change is very consistent with what we’ve seen in the online health ecosystem – the convergence of health conversations among clinicians, patients, caregivers, policymakers, the media and the industry itself. Our thanks to Dr. Zafar for his great work & for taking the time to talk to us. Be sure to follow him on twitter (@yzafar) and in the media.
For more information about the MDigitalLife Online Health Ecosystem and to download the 2016 Social Oncology Project report, just click below.
Click to Download the 2016 Social Oncology Project Report
Over the last several years, we’ve had the opportunity to study several people in the online health ecosystem who play multiple stakeholder roles (e.g., Patient-Physician or Patient-Journalist). Today I’m featuring one of the rare people who actually plays 3 pivotal roles in the online health ecosystem – Elaine Schattner, MD.
When she was practicing, Elaine was highly respected for her clinical acumen. But she’s also a breast cancer survivor and a noted healthcare journalist (she’s a regular contributor at Forbes, among others). This has given her a truly unique perspective on the way that different populations perceive and interact with the healthcare system – and their own health.
The way that Elaine engages online reflects her multiple perspectives – and her broad interests. During calendar year 2015, she mentioned 1,327 unique twitter handles (including at least 171 doctors, 77 patients, 173 reporters and 134 media outlets). She also shared links to 570 different outlets (including sources as diverse as Medscape, Nature, the New England Journal of Medicine, StatNews.com, Brainpickings.com and PeterUbel.com.)
And her audience is equally diverse. Among her more-than 11,600 followers are at least 1,200 physicians (putting her in the 99th percentile of doctors most followed by her US peers) and remarkably over 1,100 patients, caregivers and patient advocacy groups – more than any other US Oncologist. And it’s not just Elaine’s following that’s particularly strong and diverse; she also engages that audience broadly with the content she shares. During 2015, she was mentioned (or her articles linked to) over 3,600 times by nearly 1,000 people and organizations in the MDigitalLife Online Health Ecosystem database. And those engagements reflect her audience’s diversity as well:
42% from fellow physicians
35% from patients, caregivers and patient advocacy groups
10% from reporters and media outlets
13% from people and organizations in the healthcare industry
It’s a rare individual, physician or not, that can reach an audience of that size, breadth and relevance to the healthcare system. What is it that’s makes Dr. Schattner so successful in building and engaging that audience?
“On social media, as in real life, many people – in their social groups, or among colleagues – tend to nod their heads, to reiterate or rephrase what’s popular, or what they think their employer or network will favor. On twitter, that ends up generating a lot of retweets within groups of like-minded followers. But that kind of chatter doesn’t broaden anyone’s knowledge base; it reinforces silos. It’s neither interesting, nor helpful to science, or health, or anything really. I like to add new ideas to a conversation. Otherwise, what’s the point?”
– Elaine Schattner, MD
Dr. Schattner has been particularly impactful in the online conversation about breast cancer. Among the tens of thousands of participants in that conversation from the MDigitalLife Online Health Ecosystem, Dr. Schattner is the 3rd most-followed, behind only USA Today healthcare reporter Liz Szabo (@LizSzabo) and #BCSM twitter chat co-moderator Deanna Attai, MD (@DrAttai) – and followed closely by #BCSM chat co-moderator and breast cancer survivor Alicia Staley (@stales). This is even more intriguing, because Dr. Schattner rarely participates directly in the #BCSM chat – a huge driver of conversation in the breast cancer community.
“I don’t often participate in twitter chats. They provide great value for many people, but don’t fit very well with my preferred mode of engagement. I tend to have more one-on-one or small-group conversations. When things move so quickly – as they do in twitter chats, it’s harder for me to be able to do really get to know people and to understand their perspectives.” – Elaine Schattner, MD
The rise of the social media has completely changed the way that the health ecosystem interacts. As health becomes an increasingly important topic in the 21st century, the ability to connect the stakeholders – all of them – is both valuable and necessary. Led by pioneering bridge-builders like Dr. Elaine Schattner, we can be confident that a shared understanding is both possible and on its way more quickly than we could have imagined.
“I’ve always been the kind of person who speaks her mind. I’m not afraid to say and write what I think, and as an independent journalist I am free to do so. I’m not afraid to challenge the opinions of powerful individuals, including physicians in positions of leadership, journalists and others. People know that about me, and maybe some respect me for doing so. Pretty much everything I say, or share on-line, reflects what I think matters for patients. Some may trust me for that reason, even when they disagree.”
– Elaine Schattner, MD
Click to Download the 2016 Social Oncology Project Report
Advocacy in the age of social oncology is no longer about simply “raising awareness” or boosting funding. According to Samantha Watson, who founded the The Samfund after her own experience as a young adult with cancer, those who are battling cancer, and those who did, are clear that they are looking for community and emotional support as much as they are financial resources.
While the analysis of hashtag communities that provided the backbone of this year’s edition of The Social Oncology Project found that advocates have huge influence in drawing attention to high-quality information resources, Watson’s experience suggests that information-sharing is just the tip of what can be accomplished through online networks.
Watson’s primary goal is providing grants; her group has given nearly $2 million to young adults dealing with cancer-related challenges, from medical care to financial assistance for adoption. But Watson said that the Samfund recognizes that they have a role to play in building online communities, too.
Watson discussed the new realities with us in advance of the ASCO meeting; if you want to carry on the conversation, please seek out Watson’s booth on the expo floor:
Samfund is mostly young adults. Is there a sense that this new generation of survivors is connected differently because of technology?
“Social media makes it much easier to reach people we could never reach via traditional media. Peer-to-peer efforts are critical for our fundraising. We have all of these people who are connected to Samfund, and each of them has online networks, so there is a ripple effect. We can share stories, and it’s amazing to see how so many people share them. We couldn’t do that if we were relying on newsletters and emails.
The online community has been huge. Half of our grantees are part of a private Facebook group. Watching them support each other has been huge. Social media gives them a place to assemble.
There will always be some problems that we, as an organization, can’t help with. But with our network, with our Facebook group, there is always at least one person, often more, who can chime in and say ‘I’ve been there.’”
You’ve written about crowdfunding before. How does that element intersect with this new type of communication?
“Crowdfunding is huge for our community. I was treated before social media, but an earlier version of crowdfunding helped me. It was totally lifesaving. When someone you know goes through an illness, the impulse is to ask what you can do to help. But for people who are far away, there hasn’t always been a good answer to the question ‘what can I do?’ That’s changing.
We still have to deal with how uncomfortable asking for money makes people. But that isn’t something that the young adult with cancer has to deal with. Setting up a campaign for someone is a great way for friends or family to help out.”
Are there drawbacks? Does building a national—but virtual—network isolate in its own way?
“We’ve tried really hard to get the best of both worlds. It’s important to have real-world experiences. But having a connection even with those far away is important, too. For someone who is skipping their meds and is geographically isolated, finding a community online is critical. We keep our eye on that a lot.”
What online resources have you or your grantees been able to tap into?
“We send every grantee all of our resources: our webpage and the private Facebook group and Instagram and Twitter. And we ask our grantees to help us out by sharing. We learned at our recent meeting for ‘Sambassadors’ that that is what is most important. In talking to them about what we do, no one mentioned the $1.6 million we’ve given out in grants. Instead, what they kept talking about was feeling hopeful again and feeling confident again, and how that came from being a part of a community.”
Today, we’re releasing the fourth version of our annual report, The Social Oncology Project, a comprehensive review of conversations about oncology happening on publicly facing social media.
Before I note some of the lessons we learned from this year’s report, I wanted to flag how the lessons we’ve learned over the previous three years colored our approach. Our initial impulse in surveying the online landscape was to understand WHAT was being said about cancer. That helped us better understand the ebbs and flows of topics discussed online and impressed us with the pure volume of conversations.
But what we found was that trying to make sense of every last tweet about cancer could be misleading. We found a lot of tweets, but there was a lot of low-value conversation. It was difficult to draw firm conclusions about WHAT was being said without knowing WHO was talking.
So this year, we’ve boosted the signal-to-noise ratio by looking at four specific groups of online influencers who have demonstrated influence and high-quality discussions: doctors, advocates, patients and media. Though the lines between these groups are not always bright, categorizing online voices with more precision offers a more complete picture of what is truly happening in social oncology.
By looking at these four groups, across five different cancer types and two specific topics (immunotherapy and value in cancer care), we’ve gleaned four key truths about the state of the online oncology conversation:
Connections > Volume. For every cancer we assessed, we plotted a network graph, showing how every member of the community was connected to every other. What we found was that it wasn’t always the person posting the most that had the most influence: it was the individual whose network knit together the more diverse coalition.
Video is King. We also looked at thousands of links shared within hashtag communities. And despite the fact that oncology is not necessarily a visually-driven medium, we saw YouTube emerge time and time again as a site that was frequently shared, especially by patient and advocates. In a world in which we all have video cameras in our pocket, video will only play a larger role in communication around oncology.
News Doesn’t Drive Education. When hashtag communities look for new information, they tended to either go right to the source (peer-reviewed publications) or vetted medical information from the government or large cancer centers. News stories drive relative few conversations, suggesting that what’s new isn’t necessarily what is important, especially for clinicians and patients.
Doctors Serve as a Bridge to Information. Physicians in the network, across nearly every subject we analyzed, were unique in that they pushed peer-reviewed data out across the network, not watered-down summaries of research. Navigating the scientific literature can be hard—not because non-physicians can’t understand it, but because separating wheat from chaff is not always straightforward—and by directing attention to key papers, physicians play a vital role.
All of this may beg the question of what’s next. Our conversations with thought leaders—some of which are included in the report and some of which will appear on the blog in the days to come—suggest that the next big thing is smaller conversations. Though large, hashtag-driven discussions are not a part of the fabric of online conversations, we’re hearing more about the way that smaller communities can come together for information exchange in private messages, closed Facebook groups or crowdfunding platforms.
While network size will continue to be factor in making sure that the right people find each other, we look forward to exploring a future in which a kaleidoscope of small, interlocked groups drive social oncology to new places.
The learning continues at a fast pace at the Baylor, Scott & White Digital Summit. In our technology innovations panel this afternoon, we were joined by Chris Raps, VP & Americas Sales Director at NASDAQ; Beth Meyer, Director Strategic Marketing, Greatbatch; Colin McCarthy, senior manager of business development, Witricity; and Jeroen Brouwer, Marketing, Sales and Business Development Director, Philips. Here are the key insights I heard as moderator of the panel.
#1 – Security and important paperwork lead to online solutions – we can’t afford to leave board books out in the open or the results of a formulary meeting or any other sensitive topic. We can share content, do surveys, hold Q&As and basically operate with full security if we work with new, leading-edge solutions like NASDAQ has created for boards of directors. I have to say that I never realized NASDAQ did more than run their exchange…..now we know they are very aligned with the interests of healthcare leaders.
#2 – We can power devices in new ways – Witricity and Greatbatch explained to us the power of wireless energy transfer. Imagine having a pacemaker and it can be charged wirelessly via a simple wireless energy transfer device. Yes, this technology can allow us to get rid of annoying cords for our computer devices, but it is the impact it can have on medical devices and machines that is of highest interest for the future.
#3 – The last mile is happening – Jeroen talked about how Philips is innovating in home care, telehealth, remote patient monitoring and other key areas that all move care closer to the patient. This is all part of a move to connect patients to the health system when and where they need it.
#4 – The automated coach – it’s getting more real for us to get coached in an individualized way, based on information received from the devices we use. How we use devices can help us learn about behavior, how we are doing vs. our goals, how we can learn to change an important process or we can just get a personalized message.
#5 – The biggest hurdles in healthcare – Beth said it is the time to market and the cost associated with it. In particular, she focused on the importance of achieving adoption of technology, which is driven by innovative value and personal experience. Chris echoed that user experience also matters and, in the case of NASDAQ, being HIPAA compliant as well. Jeroen said it is adoption. He said that if you have the right proposition that can prove outcomes, then the health system will adopt your product.
And I would like to end with a quick summary of key insights from emerging companies that presented today. Here are a few insights.
Bloom Technologies provides data to inform prenatal health decisions. What I did not know is that we spend $26 billion per year in the U.S. taking care of pre-term babies. There are 15 million pre-term births each year and it is the #1 killer of children under 5 years of age. Bloom Technologies is exploring how to improve this situation.
The U.S. average wait time to see a dermatologist is 29 days, something that 3Derm Systems takes very seriously to decrease wait times for patients and costs for doctors. They believe telemedicine can become the new standard of care
SwipeSense imagines a day where we have “hand cleanliness accountability”. We know how important it is to keep our hands clean, particularly in medical situations.
Echo Pixelbelieves medical imaging is incomplete, so they are building a 3D solution for physicians to see clinical situations, like atrial fibrillation. More clarity, better outcomes is the idea. They want professionals to interact with patient images in an open 3D space.
Quartet Health is focused on behavioral health conditions. They are matching patients to behavioral health networks and helping both stay on track of the healthcare plan. This can reduce expenses across the board. Their goal is to build a collaborative behavioral and physician health ecosystem.
Eko Devices believes it is time to create a next generation, bluetooth enabled stethoscope that decreases/eliminates pathogens, includes telehealth applications and transfers data.
Tute Genomics is focused on whole genome sequencing. They believe every patient needs an answer and time makes a difference to know what to do and their goal is to bring genome analysis to the masses.
AliveCor develops mobile technology for heart health.
WiserTogether is delivering solutions in which clinicians and patients communicate together using the best available evidence when faced with the task of making a decision.
Senscio Systems combines sensor development with artificial intelligence technologies to built intelligent systems to transform data into knowledge for decision making.
Proteus has created a sensor-enabled pill, a small wearable patch, and applications that can be accessed via mobile devices and other computers by patients and healthcare providers. Called Proteus Discover, it directly measures medication-taking and physiologic metrics to support patient self-management and to help physicians and care teams optimize therapy
And Rimidi has a diabetes management platform to empower providers and engage individuals to more successfully manage this disease.
#1 – We have a long way to go – medical errors are the 3rd leading cause of death in the U.S., we have 387 million people who have diabetes worldwide and 44 million people with some form of cancer. We have a tremendous opportunity for technology and health experts to make a difference.
#2 – Our healthcare information needs to be available when we want it – as Sean Kelly said, we don’t talk about tele-banking, we just go online to get our banking information. But in health, we talk about tele-medicine and make it sound mysterious. As Nick added, “we don’t online, we live online”. It is time for our health information to be available to us 365.
#3 – We need to build smart filters, not worry about big data – Nick pointed out that we can harness data of virtually any type today. That’s not the issue. Rather, we need to be focused on building the right filtering mechanisms so we get the information we need when we need it…..without any noise.
#4 – What is AI and how is it meaningful? – Alan described the importance of AI, Watson and IBM’s commitment to health right up through their CEO, Ginni Rometty. Powerful. Nick pointed out and the panel agreed that artificial intelligence (AI) won’t replace medical providers or what humans do today. Instead, it will provide “augmented intelligence” and help us serve patients more effectively.
#5 – Failure is at the heart of innovation – lest we forget, Sean reminded us that “failure is the heart of innovation”. Alan said it another way when he was discussing mobile technology and encouraged the audience to simply try….try pilots, dive in the river. We have to try, fail, repeat and then succeed. Technology and medicine are similar in this regard, as is science overall. It’s iterative innovation that really leads to breakthroughs.
#6 – Experience matters…alot – a great lesson for the technology industry was emphasized by the panel. You have to work on the front lines with providers if you want to create innovation that matters. Great ideas won’t get formed in conference rooms. The real insights will occur in medical clinics and labs. Important reminder for all innovators.
And on this topic, I spoke with Dr. Peter Dysert, who is Chief of Pathology at Baylor Scott & White Health. He makes a great point that there are really three fundamental ways to improve healthcare and the world of medical providers. They are:
Communications – improve and facilitate our ability to communicate.
Habits – make the right thing to do the easiest thing to do.
Informed Decision Making – just show me what I need to see.
If every company and entrepreneur worked against Dr. Dysert’s filter, we would accelerate innovation far faster.
#7 – CMS and HHS are changing the rules – Fred illustrated for us how rules are changing in a mature industry in many ways, but one example was very impactful. CMS and HHS are changing the rules of healthcare due to the Affordable Care Act in an unprecedented and untrackable manner. And what this means is that we have to be on our toes to understand the changes, adapt to new rules and still provide the best care possible. We’ve never had a more important time to being pay full attention to how government is evolving our world of care.
#8 — Apple & IBM have partnered for 100+ healthcare apps – two of the world’s leading companies are investing the time to partner and build apps for 14 industries, including healthcare. We need this type of applied knowledge from world leaders, but don’t forget point #6, IBM and Apple.
#9 — Improving the knowledge of all doctors can improve outcomes – Fred said it well when he said “what are the problems that the lowest ranked doctor in your healthcare system today and can AI help this doctor”? In other words, we really can improve care via augmented intelligence. We just need to ensure that habits change to accept it.
#10 – Simulations matter – Sean said that we should not be reaching for sexy technology. We should, however, be running simulations to understand how to use technology more effectively. Dr. Dysert made an analogy to airline pilots. They do technology simulations constantly, so they know what to do on the spot. It’s becoming time for medical providers to do simulations with this level of intensity.
Overall, this panel is a great example of how healthcare and technology are learning together in a manner that, quite frankly, didn’t happen years ago. It’s time for us all to keep intensifying our knowledge sharing, since patients are waiting……and always will be….for us to collectively transform healthcare.
W2O Group is excited to partner with Baylor Scott & White Health (BSWH) to launch their inaugural Digital Summit in Austin, TX today! The event was dreamed up as a way to connect executives at the BSWH with innovators across multiple industries to inspire them to improve patient and physician experiences by utilizing innovative technologies.
The summit will consist of speaker panels featuring proven innovators, health startups pitching for an accelerated path to a pilot at BSWH and an interactive session featuring hands on demos of innovative technologies changing the healthcare world.
To give you an idea of the companies participating in the summit, we asked a few of them to share some thoughts on what they would want the world to know about their organization and their work.
Wireless data transmission has become ubiquitous in our daily lives, yet we continue to struggle with power cords and power transfer limitations. Unlike the consumer electronics and automotive industries, where wireless energy is reaching an inflection point, the healthcare industry has yet to harness its potential. With over 51 million surgeries taking place annually in US operating roomsthat are frequently challenged with a tangle of procedure hampering cords, significant opportunity exists to apply wireless to untether the healthcare space for physicians and their patients, enabling therapy delivery with fewer limitations.
The time is now for the development of wireless power transfer, which holds the potential to improve how healthcare is delivered in myriad ways. For example, many of today’s active medical implantable devices are large, require several hours to recharge, and have limitations due to the efficiency and level of power that can be delivered. Wireless power transfer will enable these devices to become much smaller, expanding surgical approach options for physicians, allowing deeper implantations and higher power levels, as well as eliminating the need for follow-on battery replacement surgery in some applications. Patients will experience improved comfort with easier charging.
Another area of potential improvement includes operating rooms and surgical tools. Today, surgical tools either utilize large rechargeable batteries or are tethered to an unwieldy cord that frequently tangles, presents tripping hazards, poses an increased infection risk and can negatively affect the ergonomics of the tool. With wireless energy transfer, surgical tools will utilize smaller batteries or none at all, making them much easier to handle and increasing usability while eliminating time spent managing cords. These improvements may ultimately improve performance, shorten procedure times and positively impact patient outcomes.
Finally, significant opportunity exists to enhance the medical experience for patients, who often seem “wrapped” in cords. One particularly poignant example of this involves a mother who was unable to hold her newborn in the NICU due to the cord web surrounding him. And while it’s not a panacea, embedding the technology in a range of monitors, often in concert with wireless data, could significantly lessen the physical ties encumbering a patient.
Power and disruptive innovation are core to Greatbatch’s roots. Wilson Greatbatch, the co-inventor of the first successful implantable pacemaker, founded the company in 1970 to develop long-lived batteries to fuel life-saving/life-enhancing medical devices. Today, Greatbatch is one of the largest medical device outsource (MDO) manufacturers in the world, providing innovative, high quality medical technologies for the cardiac, neuromodulation, orthopedics, vascular, advanced surgical and portable medical markets. Our vision is to enhance the lives of patients worldwide by being our customers’ partner of choice for innovative medical technologies and services. We believe that advancing wireless energy is central to achieving this vision, as it will bring transformational change to healthcare and empower physicians, healthcare professionals and their patients. Together with WiTricity and our partners we look forward to building the wireless surgical suite, patient room and therapy and mobility devices of the future.
Spot On Sciences, Inc. develops and markets innovative medical devices to improve collection and storage of biological fluids for medical testing. The premier product, HemaSpot™, is a simple to use device for self sampling and robust storage/shipping of blood samples at room temperature. HemaSpot™ uses a finger stick to collect and dry blood within a protective cartridge which can be easily mailed to a medical test site for analysis.
80% of healthcare decisions are based on diagnostic testing, but costs only 2% of total healthcare expenditures. Precision medicine is highly dependent on personalized medical testing and thus improvements in diagnostic testing has been targeted as one of top requirements for improving health and reducing healthcare costs.
However, current methods for getting a blood sample by phlebotomy is outmoded, costly, inefficient and highly inconvenient and difficult for patients- especially for homebound, elderly and patients in remote areas.
Spot On Sciences enables a new model for collecting blood samples and generating health data: move the sample instead of requiring the patient or the lab to move. Our new blood collection devices HemaSpot, makes blood sample collection and transport very easy and efficient and delivers a high-quality sample to a lab for detection of numerous markers for infectious disease and health status. Mobilizing blood samples and delivering data by mobile phone offers a simple but powerful method for increasing access to health information, especially for remote or low resource areas.
HemaSpot, an innovative and easy to use device, enables a blood sample to be self-collected from any location and at any time. Using a finger stick by lancet, two drops of blood are applied to the HemaSpot device and the blood wicks into a pre-cut absorbent paper. The cartridge is then snapped closed and the blood is dried by a desiccant within the cartridge, leaving the sample stable at ambient temperature with no refrigeration or cold chain requirements. The enclosed cartridge prevents sample contamination and reduces biohazard risk from downstream handling; the robust cartridge can literally be run over by a truck and dropped into water without damage. Sample collection takes less than 5 minutes and is immediately ready for transport to a lab – via mail, dropbox, or even by drone – for analysis.
Two devices are currently on the market: HemaSpot-HF for whole blood and HemaSpot-SE for separated blood (cells separated from plasma) from a fingerstick.
By making it easy and convenient for consumers to provide a blood sample, access to medical testing is improved for the entire population and especially for underserved populations such as elderly, home bound, low income and from remote areas. For healthcare providers, having timely and increased access to test results could significantly improve diagnosis and improve patient health. The HemaSpot blood collection device is a simple tool and solution that can revolutionize medical testing and allow us to realize the promise of precision and personalized medicine.
Imprivata, the healthcare IT security company, provides healthcare organizations globally with a security and identity platform that delivers authentication management, fast access to patient information, secure communications, and positive patient identification. In healthcare, it all starts with the patient and their protected health information (PHI), so healthcare organizations go through extraordinary means to put IT security systems in place – designed to keep PHI in, but not let it out – creating barriers to protect PHI such as complex passwords and security policies that impede workflow.
Imprivata removes those barriers, allowing care providers to securely and efficiently ACT: Access, Communicate, and Transact PHI to address critical compliance and security challenges while improving productivity and the patient experience. With Imprivata solutions, hospitals can correctly identify patients at registration and providers can access PHI conveniently on-site or at home, communicate PHI using multiple devices, and transact PHI for important clinical workflows, including electronic prescribing of controlled substances (EPCS) order signing and medical device access.
Imprivata offers a platform of security products designed to enable healthcare to ACT with patient information both securely and with conveniently, including:
Imprivata PatientSecure, the biometric patient identification platform that positively identifies patients using palm vein recognition, creating a 1:1 link between a patient and their health record across multiple systems. PatientSecure improves patient safety and minimizes patient identification mistakes and duplicate medical records that traditional oral and paper-based patient identification methods cause.
Imprivata OneSign, an enterprise-level single sign-on (SSO) and virtual desktop access solution that streamlines desktop roaming and automates access in one seamless, secure system. OneSign improves provider productivity and eliminates the user frustration, time inefficiencies, and security issues that password-heavy access systems cause.
Imprivata Cortext, a secure, integrated communications platform for healthcare. Cortext improves care coordination by replacing the inefficiencies of pagers and solving the security and compliance issues that unsecure texting practices cause.
Imprivata Confirm ID, the comprehensive identity and two-factor authentication platform for remote access, EPCS, medical device access, and other clinical authentication workflows. Confirm ID offers the broadest and most flexible range of authentication options to eliminate the barriers to transacting patient information that traditional authentication technologies cause.
We are so excited to learn and be inspired by the companies that will be participating in the summit. Check back soon to learn about the additional companies that will be participating in today’s summit!
It is with great pride that I introduce today’s guest. I’ve known John Hallock for over 10 years…back when it felt like we were the only two people in the free world working in health IT marketing and communications. Today, John is vice president of corporate communications for Imprivata. For those of you who know John, you know that he has a natural gift for storytelling. As we were both waiting to fly back on the red eye from last week’s HIMSS, I seized the opportunity to hit him up with questions. He didn’t disappoint. Read on…
What does your company do?
Imprivata is one of the largest health IT security companies in the world. We serve 1,500 healthcare organizations across the globe. Our technology allows providers to securely access, communicate, and transact patient information securely. As we see it, digital health is at an inflection point: It is no longer about driving EHR adoption, but about how we connect those EHRs and allow information to follow the patient. As more and more healthcare moves online, we are a vital ingredient.
Describe the role that you and your team play in advancing the company mission.
I oversee all corporate communications, which includes media relations, government affairs, analyst relations and some internal communications along with HR of course. It’s an exciting time. We went public 18 months ago. There is a lot of growth and the organization is scaling quickly. Communications – both external and internal – is critical for keeping everyone on the same page, setting expectations and explaining how we innovate and launch new products.
What is your biggest success in the last year and why does this make you proud?
I joined the firm about a year ago. The company wanted to increase focus on business media and national media and I had a lot of experience doing that at athenahealth and CareCloud. Over my career, I’ve primarily worked with healthcare technology companies. Unless it’s Apple or some wildly successful online service, you need to very quickly figure out how you can tie the company’s products to the issues that matter most to clients and the public at large. With most companies, you’re lucky if you have one or two products that can do that. Early on at athenahealth we had to work hard just to get people to realize how big of an issue medical billing was. At Imprivata, I am lucky to have three.
For example and right out of the gate, I focused on electronic prescribing for controlled substances. Why? Because our solution is designed to address a high profile and important issue – addiction to prescription painkillers, which has become a nationwide epidemic. Imprivata sells the security technology that allows physicians to securely send electronic prescriptions for controlled substances to a pharmacy. Replacing paper prescriptions with electronic prescriptions is seen by experts as a big step in preventing doctor shopping and drug diversion – i.e., when people with addiction problems go from doctor to doctor collecting prescriptions for painkillers and other controlled substances. We saw immediate national press and the opportunity for real thought leadership that educated audiences on the issue and made the case for change.
We are about to take a similar, but more lighthearted approach to helping rid the medical profession of pagers. We also have a great deal to say about patient identification with our new Palm-Vein biometric patient ID platform. It plays directly into the interoperability discussion underway across the industry right now.
How many years have you been going to HIMSS and what’s changed the most?
This was my 12th. In terms of what’s changed the most, two things come to mind. First, security has become a leading topic. That was overdue and I’d like to think Imprivata has had something to do with getting people talking about it. And second, I would have to say…Allscripts’ colors. Every year I look forward to seeing what Allscripts’ new corporate colors are going to be as they pretty have much covered the spectrum at this point.
Outside of work, what are your favorite things to do?
I played golf in college and recently got back into it. One thing I can’t quite figure out is…based on the way most technology folks swing a club, it is a mystery as to why they would ever want to go near a golf course, much less sponsor the sport. Mind you, that’s not a commentary on my boss or CEO – they hit em straight every time (chuckle).
When I’m not on the golf course, I’m evaluating talent for the upcoming NFL draft. Belechick and Tom have me on retainer so this time of year I’m either breaking down film or I’ve got a stop watch and clipboard in hand. I’m only half joking – I do these things, but the Coach knows nothing about it. Also, I am proud to report that I no longer get into Brady/Manning debates with strangers at airport bars.
How do you empower and motivate your employees to do their best possible work?
Early in my career, I worked at a few big agencies — writing, doing media relations…the usual stuff. If you’re lucky, you get exposed to some bosses that show you how to be part of a team. It’s always great to be singled out as a top performer, but your impact will always be limited if you don’t learn how to collaborate with all the folks on your team. When I went to athenahealth, I tried to build and run a team that gave everyone the support they needed and allowed them to do their best work – and I had some success and failures on that front for sure. We are doing the same here at Imprivata. Once you become a manager, your job is to set others up to be successful. That can take some people a long time to learn — it certainly didn’t happen overnight for me. Of course, I still like picking up the damn phone and calling a reporter or producer and getting the big hit as well.
If a PR/Marketing God exists, what would you like to hear that God say when you arrive at the pearly gates? (my spin on James Lipton’s famous last question from Inside the Actor’s Studio)
If I can get there, and that’s very much up for debate, I would want to hear…”Listen, you did really well for a kid who never really learned to type. You told some stories that changed the healthcare system and impacted peoples’ lives. Kid from Worcester, so all things considered, ya done good.” Something like that. I am still working on my book “Travels with Johnny.” You are in it Rob, but don’t worry…I left out the shenanigans at HIMSS’08 (smile and chuckle).
In 2016, it should be no surprise that many doctors have translated their offline influence into social influence, sharing health information with colleagues and patients. While HIPAA and the need to maintain patient privacy are well understood by physicians, what is less understood is the Federal Trade Commission (FTC) guidance on social media. In order to protect the general public and ensure that online influencers are transparent about payment and gifts, the FTC issued Endorsement Guides. The FTC suggests that this be accomplished using hashtags such as #ad, #paid, #sponsored or #promoted in posts.
STATNews recently highlighted a few physicians who did not make their relationship with biopharma companies readily apparent when commenting on the company products. When we work with physicians to educate them on using social media, central to this effort is how to use it appropriately, including an explanation of the FTC regulations. The FTC notes that “if there’s a connection between an endorser and the marketer that consumers would not expect and it would affect how consumers evaluate the endorsement, that connection should be disclosed.”
What’s a Physician To Do?
If a physician is working with a biopharma company and is being compensated for their expertise as a key opinion leader (KOL), we recommend that this be disclosed. One way is to add a hashtag with the name of the company and the acronym KOL (#CompanyKOL) to social posts. This makes it clear that the physician has a relationship with the company. In order to provide this clarity, one of our clients requests the healthcare professionals use #spokesperson in their posts. And, because the relationships between healthcare professionals and biopharma companies can be multi-faceted, another way to highlight the connection is for the physician to add a link to in their bio that explains the details, such as involvement in clinical trials.
It’s also important to note that, similar to bloggers, the physicians are not being paid for their positive opinion, but for their expertise. Consumers want to hear from physicians and learn from them. It’s just important that the context is apparent.
Always Keep Fair Balance in Mind
Many physicians also aren’t aware of the complex Food and Drug Administration (FDA) regulations on promoting drugs. This includes the need to include “fair balance” (i.e. if you feature the benefits of a medication, you need to equally feature the potential risks). The FDA is clear that this requirement needs to be maintained even when there are only 140 characters on Twitter. A link to the important safety information does not suffice.
When working with influencers, whether patients or physicians, we always share the FDA and FTC guidelines so that they can make educated choices when sharing on social. No matter who you are, authenticity and transparency are essential to building relationships via social media.
If you’re a technology and digital health nut like me, then you’ve probably already picked up on the fact that the JP Morgan Healthcare Conference has become a must-attend event for digital health companies and companies otherwise focused on digital health. What’s that you say – JPM is for investors focused on biotech? That, my friends, is an accurate statement to be sure…but oh so incomplete. For while the preponderance of presenters at #JPM16 are still biotech and life sciences related…the online conversation surrounding #JPM16 (something that my colleagues and I track and analyze very closely), is showing only a slight lead for #biotech vs. #digitalhealth. A leading indicator? Perhaps. Watch this blog for our post conference analysis of #JPM16 happenings and conversation trends.
I Heart #digitalhealth – So Where Should I Go This Week?
Now, for those of you who may just be getting into the digital health game or have never been to JPM, you should absolutely start by attending the conference sessions. There are numerous digital health companies presenting this year and healthcare companies who will otherwise be articulating a digital health strategy. But there is life beyond the St. Francis my friends! Luckily you have your faithful narrator to guide you. Here then is a list of events you need to consider (and possibly sneak your way into).
Rock Health’s Top 50 in Digital Health (Sunday evening) – Halle & Co do an amazing job not only investing in and advising digital health startups, but they are prolific publishers, marketers and advocates. To wit: Sunday’s event to recognize some of the most important peeps in digital health. Rock on Halle!
W2O Group’s DH VIP Luncheon (Monday at Noon) – Pardon the shameless plug, but I’d like to think that me and the firm play a part in all this digital health goodness. Historically speaking, W2O Group has been a major presence at JPM since our founder Jim Weiss first hung out the shingle in 2001. Since then, our focus has expanded beyond biotech and life sciences to tech and digital health. That’s where I come in…Jim allows me to hold a lunch that brings together a very unique set of digital health stakeholders (companies, providers, payers, press, investors, policymakers – you name it). This diversity ensures an intriguing discussion, a valuable networking opportunity and a fun way to kick off the week. This year, we will feature a panel moderated by none other than athenahealth CEO and co-founder Jonathan Bush. Jonathan will be joined by the experts below who we are just thrilled to host. We look forward to seeing many of you there!
Michael Blum, Chief Medical Information Officer at UCSF & Director of the Center for Digital Health Innovation
Aman Bhandari, Executive Director of Data Science and Insights at Merck
Susannah Fox, CTO at U.S. Department of Health and Human Services
JPM DH Panel (Monday at 5PM) – You may or may not know Dan Wilson, but he is one of the main reasons why JPM is focusing more and more on digital health. Dan and his colleagues originated the annual digital health panel discussion at JPM as a way of shining a light on some truly innovative companies – companies not in biotech or life sciences, but technology companies focused on solving problems in healthcare. This year’s panel – led by the incomparable Lisa Suennen (aka @VentureValkyrie) – is entitled: “Can Data Deliver Us from Our Healthcare Dilemma?” It will feature yet another bumper crop of innovators, including Grand Rounds, Syapse, Evidation Health, Aledade and HealthReveal. And remember to get there early – last year’s digital health panel was SRO! StartUp Health Festival (Monday-Tuesday) – Steve Krein, Unity Stoakes and the gang at StartUp Health have been evangelizing digital health for years. Though headquartered in New York City, they are committed to supporting and accelerating the growth of startups – what they call “transformers” — the world over. I am a huge fan of their research reports and their ability to attract experts from a variety of fields to advise and assist their transformers. The runaway success of their past efforts at JPM led them to create a two day program for #JPM16.
Venrock’s 5th Annual Healthcare IT Celebration (Tuesday evening) – Venrock has compiled a distinguished track record amongst many successful VCs in digital health. Bryan Roberts and Bob Kocher lead the digital health investment strategy at the firm and, in their spare time, regularly speak and publish as top industry thought leaders. If you don’t have a ticket already, chances are slim you can get one. But, hey it’s always worth a shot…see how many degrees of separation you are from Bryan or Bob on LinkedIn…they are so connected that you will probably find somebody to introduce you.
Box’s Party (Tuesday evening) – While CEO Aaron Levie grabs all the headlines, Missy Krasner is Box’s business lead and evangelist in healthcare and digital health. Missy may be the most connected person in all of digital health, having played key roles prior to Box at Morgenthaler, Google, ONC and Carescience. She has brought a focus on digital health and healthcare to Box that is the envy of other technology companies. Spending a night with Missy talking digital health at JPM should be required of anyone joining our special club.
Health 2.0 Winter Tech (Wednesday) – For Health 2.0 fans who can’t get enough of a fix in October, founder Matthew Holt created a cold weather version. I’m a fan of everything Matthew does, including his dancing. Seriously, anything that Matthew and his partner Indu Subaiya put together is worthwhile. In this case, they seized upon the idea that…attendees at JPM want even more digital health investment talk. And they were right. Matthew and Indu know all the smart VCs. They do a great job at curating them along with startups and more.
UCSF Informed Health (Thursday) – Our friends at UCSF anchor the week with their very own gathering of digital health experts. The agenda features many experts at UCSF and from provider-land writ large as well as technology leaders from some of Silicon Valley’s leading companies. Dr. Michael Blum and Dr. Aenor Sawyer have combined efforts to create yet another high quality program that underscores UCSF’s leadership in digital health.
Who to Follow
Here are several folks that I regularly follow and who can be relied upon to keep you in the know when it comes to digital health and #JPM16. (Note: For the purposes of this list, I am excluding my many friends in the media as I love them all dearly and would not want to show favoritism. Funny, I say the same thing to my children. I hope you believe me as they do. J)
Rasu Shresta – How could he possibly have time to be as active as he is on social media? Well, there’s a reason that Dr. Shresta is the chief innovation officer at UPMC…and I’m not. Follow him and you will learn all you need to know about real innovation happening at UPMC and beyond. He is a one-man curator of the most important developments in digital health news.
Lisa Suennen – I mentioned Lisa earlier as the moderator of this year’s digital health panel at JPM. Formerly with Psilos where she led the VCs digital health investing, Lisa was one of the first VCs to really focus on digital health. Her experience and deep knowledge make her the perfect filter of what’s meaningful and what’s fluff.
Cris De Luca – although new to JPM, Cris is no stranger to digital health. As one of the primary movers and shakers behind J&J’s digital health efforts, Cris is prolific on social media and my early choice as “Top Newcomer” to JPM.
Brian Ahier – Brian is one of the best curators of digital health content on the planet and he’s probably been at it the longest. He is a must follow to keep abreast of many digital health topics and conversations.
Hope that’s helpful. Tweet me at @robcroninNY and let me know what your best experiences are this week at #JPM16.
In 1982, a small group of investment bankers at Hambrecht & Quist launched an investor conference for companies in the biotechnology space. At the time, biotech was still seen as something just beyond alchemy: using genetically engineered bacteria to create a whole new spectrum of medications.
The conference has grown each year, surviving a series of corporate changes that have left the confab in the hands of J.P. Morgan Chase. Once the province of biotech executives and bankers, the early-January event now draws companies across the health care space, along with media, marketers, public officials, entrepreneurs and anyone else with a stake in the future of health.
That expansion means that, every year, we get requests on the best way to “do JPM,” which is like asking for the best way to “do Disney”: there’s no right way to conquer a meeting that has become this sprawling. But over the past few years, there have been thousands of words of guidance penned. Here are the best hints to maximizing the experience:
“Meet some new people, some old people, some random people doing cool stuff you know little about. Part of the magic of JP Morgan is the sheer density, and diversity, of people in one place doing so many interesting things.” – Luke Timmerman, #JPM14. The whole thing is worth a read, and I provided counter-commentary here.
“Expect to find eight to 15 events all competing for the same audiences simultaneously, all day, every day, Monday through Wednesday. Then expect to wrangle a last-minute invite to the 50 or so evening receptions every night.” – Chelli Miller, #JPM15. Pretty sure that’s tongue-in-cheek, but I may have met some folks on Tuesday morning who looked like they hit 50 parties the previous night.
“You ‘win’ J.P. Morgan in June, not January. Swapping business cards for four days means nothing if there’s no followup until everyone arrives in San Francisco in early 2016.” – me, #JPM15.
“3 things you won’t see at JPM: Some really interesting [private] presenting companies … patients … frank discussions about R&D and ‘worker bees.’” – Ron Leuty, #JPM15. Check the link, which also notes, helpfully, how many steps it would take for meeting attendees to reach the “real” San Francisco: 351 steps to the nearest massage parlor, 240 steps to the scent of urine, 135 steps to the hot dog cart.
Please tweet your best hints. Naturally, use the conference hashtag: #JPM16. And see you at the Monday night tweetup!
In the last year, Bayer went through the biggest transformation in 150 years, incorporating digital into its DNA: a top-down, CEO-prioritized digital strategy. This change has been implemented with a digital council, a digital circle and digital transformation teams. According to Jessica, priorities lie with the creation of digital structures, enabling great people to do great work. In other words, the secret for digital transformation is money and people.
While not naming explicit inspirational companies, Federer highlights the impact of partnerships with big, established digital leaders that help Bayer find specific solutions. Equally important are cooperations with start-ups, such as “Grants4Apps”, an accelerator program by Bayer that gives start-ups a space for collaboration – currently one of Jessica’s favorite initiatives.
Lastly, Jessica Federer provides two health-care insider treats; the first being the importance of reading The Economist and The New Yorker, but also Vanity Fair, as digital transformation is driven by society and cultural trends. As her second “audience treat,” Jessica spills the secret that despite strict healthcare regulations, talking to regulators will drive innovation, as they want to innovate just as much as you do. Nonetheless, it is crucial to “follow the rules”.
Stopping the focus on digital
Ultimately, Federer hopes to soon end this newly adapted focus on digital. She continues to explain this seemingly paradox statement: “What you do well, goes away,” meaning that digital transformation teams won’t be necessary once all marketing becomes digital and a natural aspect of Bayer’s business.
About Jessica Federer
Jessica Federer works at Bayer, a global enterprise of 113,000 people focused on advancing ‘Science For A Better Life’ through health care, agriculture, and high-tech polymer materials. Within Bayer, Jessica has held positions in Regulatory Affairs, Market Access, Communications and Public Affairs. She received her Master of Public Health degree from the Yale School of Public Health, and her Bachelors of Science from The George Washington University. Originally from St. Louis, Missouri, Jessica now lives in Dusseldorf, Germany. Jessica is passionate about translating digital developments into public health advancements, and is an avid supporter of global childhood education.
At today’s PreCommerce Summit, Colin Foster wanted to know from Dina Rey, Head of Digital Group at Roche, Anna Gruebler, Data Scientist and Software Engineer at Altviz, Jessica Federer, Chief Digital Officer at Bayer, and Anita Yuen, Global Head of Digital Fundraising at UNICEF, how digital has influenced the well-being of society.
4 Key Takeaways
Digital content is driven by the business and therefore it is important to prioritize the business’ value as well as its medical or commercially related objectives
The greatest challenge to creating an integrated digital strategy is in finding the right people. But it is also the most rewarding to find those people. As Jessica Federer explained, “Find the people who will open the doors, step through and lead it.”
It is crucial to have strong leadership – a digital champion – who believes in digital with or without evidence in order to open doors and be willing to innovate and disrupt the status quo. The most important factor is being able to speak both languages and being able to talk about the data from a marketing and the science perspective. Therefore it can be irrelevant whether a digital marketer is male or female, a scientist or an engineer.
Digital enables organizations to engage external people to bring about digital transformations. By being able to improve touch points and interfaces with organizations and foundations, digital allows an improvement in the way we connect with the different stakeholders. This creates more traction and engagement with all stakeholders and enables us to impact well-being.
When discussing whether it is better to have people who know the business and teach them digital or have digital experts and introduce them to the business, the panel was in agreement that both types of people are needed. You need people who know the business objectives, but you need the geeks that will inform them.
Data, or more specifically Big Data, was the focus of Anna Gruebler’s talk at the #PreCommerce Summit in London today. While we may be aware of its omnipresence, it is its use that is of interest; most of us are not even aware of what is at our disposal, especially in the area of healthcare.
For example IBM’s Watson Health, one of the world’s biggest ‘super computers’, aims to give healthcare professionals better access to data to support the delivery of patient care. This computer strives to combine ‘Explory’s technology with IBM’s powerful Health Cloud and Watson’s cognitive capabilities, to expand the reach of health insights so that big data can finally be used more easily to transform healthcare.’
However we must also remember the challenges that data in the healthcare sphere poses.
First and foremost, the sheer volume of data that is out there, it all needs storing.
Secondly, data’s velocity. We are taking, sharing and storing more and more.
Thirdly, data’s variety. Pictures, text, data mining, audio, the options are endless.
Fourth, and potentially most crucially, veracity. Is the data that we are collecting and storing actually accurate? Does the data that we have gathered reflect the actual user behavior that we’d like it to? How do we ensure that it is accurate?
This is especially crucial regarding the UK’s proposed Care.Data scheme. An opt-out scheme, this will save an individual’s personal health data in order to make it accessible to the likes of healthcare practitioners. While this may be useful if my pharmacist needs my doctor’s notes, it would also mean that my potential health insurer would know all about my medical history… And what if, when considering veracity, that data isn’t accurate?
Kim Kardashian taught us all a tremendous amount about the perils of using social media for prescription drug promotion this week, but the real message seems to have been missed by most folks.
The media, who can’t resist an opportunity to write gimlet-eyed hot takes about the reigning queen of famous-for-being-famous, widely reported this week’s news that the U.S. Food and Drug Administration sent a warning letter to Duchesnay, the maker of the morning sickness drug Diclegis, after Kim Kardashian took to Instagram to extol its virtues.
The FDA warning was utterly unsurprising. While Duchesnay and Kardashian took some pains to include a link to safety information, the overall content is clearly a violation of the agency’s longstanding policies and recent guidance. (A link to safety information, once called the “one-click rule” and heralded as the best way to ensure that online promotion offers a fair balance between risks and benefits, has been utterly rejected by the FDA.)
These are not new issues to us. In fact, our expert teams handle social for pharmaceutical and healthcare companies daily. This was a rookie mistake by Duchesnay — or a blatant risky one. With priopriety analytics – including our exclusive MDigitalLife database of social activity by physicians – we drive global pharmaceutical and healthcare-related communications decisions across W2O, including WCG, Twist and BrewLife.
So while the FDA’s rules may be overly strict, they’re no longer that confusing. The Kardashian post, then, reflected some combination of ignorance, recklessness or calculated cunning that the risk of an FDA warning would be worth the flood of attention.
Except that there was never a flood of attention, at least, not the important kind.
Google Trends shows much the same phenomenon: a small spike, but one that looks far less impressive when other pharmaceuticals are included as comparators.
So the net effect was that a post that went nearly 50 million people, many squarely in the young-mother demographic, and received upwards of a half-million likes, drove only a few hundred people to research more about the drug on Wikipedia. As a point of comparison, Angelina Jolie’s mastectomy pushed Wikipedia searches for “mastectomy” from 1,000 to 300,000 in a day: a 23,000 percent increase.
To be sure, it’s possible that enough people skipped Google and followed Kardashian’s web links and the impact was far greater, but the fact that so many eyeballs sent so few people to Dr. Google should raise red flags.
The lesson here is not that FDA rules should be followed (they should, and we can help) but that social media impact can’t be measured on likes alone (we can help with that, too). The Kardashian post was designed to catch the eye of people that mattered when it comes to pregnancy. It turns out that the heads that really turned were at the FDA.
Something unusual happened in Congress in early July — an overwhelming bipartisan approval for a health care bill. But despite the 344-77 vote for the 21st Century Cures Act, the increasingly vocal opposition from oft-quoted critics of pharmaceutical, biotech and device companies should be taken as a warning sign for advocates who want to see this measure become law.
The bill is designed to boost drug discovery and help get patients with rare diseases additional access to treatments and cures, mostly through various reforms of the FDA approval process as well as additional funding for the National Institutes of Health. (The Regulatory Affairs Professional Society has done a terrific explainer for those who want to dive into the deep details.)
More than 700 groups, from the Alzheimer’s Association to the American Society for Clinical Oncology, to patient-focused rare disease groups to companies and trade associations in the pharmaceutical, biotech and devices spaces, support the Cures bill. That support has shown up in traditional spaces such as Capitol Hill visits, as well as digital campaigns on Facebook and Twitter (#Path2Cures, #Cures2015.)
As it should be, the focus of these efforts has been on the benefits for patients with challenging diseases. Even rank-and-file House members have gotten into the act, such as in this short video from Rep. Reid Ribble (R-WI).
The critics emerge
Yet now with the bill headed to the Senate, that kind of organized support may be even more important. Media-friendly experts such as Rita Redberg, editor of JAMA Internal Medicine, and cardiologist Steve Nissen of the Cleveland Clinic, are being quoted in articles criticizing the Cures bill. The New York Times’s editorial board, often taking cues from the opposition groups, criticized the legislation last week, though it stopped short of saying the entire effort should be scrapped.
The challenge now for those who want to see the bill through the Senate – in addition to trying to avoid big arguments about petty differences as the process unfolds — is to continue to emphasize the real world impact the bill would make. Patients who could benefit from expanded access to “compassionate use” of drugs should be front and center. Groups who want to see “patient experience data” folded into regulatory decisions – because different patients may have different risk tolerances – should be talking more often. And, to reflect the widespread backing for increased research funding that is in the Cures bill (nearly $9 billion extra for the National Institutes of Health over the next five years), scientific experts should be explaining over and over the need for new discovery.
Where are the physicians?
A quick review of our MDigitalLife database—a validated list of U.S. doctors with digital footprints—suggests that physicians aren’t out in droves driving the conversation. That means some of the most trusted voices on the subject of medicine haven’t been heard from yet, and doctors could yet shape this debate. Communicators trying to line up new wrinkles for the continuing campaign to pass the Cures bill should consider engaging with physicians. As our colleague Greg Matthews has written, physicians are not only active on social media, they often influence news coverage.
Conversation about the Cures bill seems likely to spike again in mid-September, when a hearing or hearings could be held in Senate committees. We’ll continue to monitor and look for new and old voices influencing the debate as action develops over the fall. Senate leaders have signaled that they will write their own version of a Cures bill, which could extend the discussion about this legislation until early 2016.
Reporters covering the legislative process will likely focus on the lobbying effort and the political clout of the industries backing the bill. This makes the real world stories – and the use of paid, earned, shared and owned content online – even more important for a successful campaign in the months ahead. The next treatment or cure could be dependent on it.
Periscope, the live-streaming app, launched nearly three months ago. Owned by Twitter, the app can be used with either a Twitter account or a phone number and allows anyone with a smart phone the ability to share their view with people around the globe.
Scoping tourist attractions and beautiful views are a staple of Periscope broadcasts, but one of the best ways we’re seeing it used is for education. Experts or advocates for a topic important to them can live stream themselves talking and answering questions that come through in the comments.
You’ll find Periscope accounts by physicians across many specialties, but so far most of them are lurking to see what it’s all about. Yet there are a small handful of innovative, early-adopters who are making their mark and finding a way to make a difference in people’s lives through live-streaming.
Featuring three physicians using Periscope
Neil Floch, MD, Fairfield County Bariatrics & Surgical Specialists in Connecticut (1,107 Periscope followers).
A passionate advocate for preventing and treating obesity, Dr. Floch uses Periscope daily to host “Ask Dr. Floch” sessions. He always begins with a statement that he can only answer general questions and cannot answer a specific problem people may have.
In a phone call this week, Floch shared, “From a medical standpoint, I use Periscope to educate people – specifically on obesity and the world obesity pandemic. I want to give them the true, accurate, medically-supported evidence of what is causing the epidemic,” shared Floch. “Two thirds of the US is overweight or obese. I want to reach out to as many people as I can. When you can see someone talking, that is an incredible advantage.”
Floch has also used Periscope to broadcast events his practice is hosting, such as a bariatric surgery fashion show at Lord & Taylor. He tweeted there were 150 people attending in person, but they reached another 588 people who watched on Periscope.
A primary care physician, Dr. Vaughan, uses Periscope throughout his day to educate people about general health topics. He frequently scopes procedures, such as giving cortisone injections and performing skin biopsies (see an archived scope of a rash biopsy here).
Vaughan is becoming popular for his daily “Ask the Doctor” scopes, scoping from an exam room with an assistant holding the phone for him. Patients ask general questions about health issues such as childhood obesity, skin concerns and mononucleosis.
It is clear Vaughan enjoys being in front of the camera and his patients do, too. He shared with a chuckle, “There’s an interesting phenomenon that happens when you put a person in front of a camera, they behave differently. The patients are more positive during procedures and give me the impression that they think I’m wonderful.”
In addition to Periscope, you can also catch Vaughan on his weekly internet radio program called Medically Speaking Radio.
A urologist on a mission to educate about men’s health issues, Dr. Brahmbhatt and colleague Sijo Parekattil, MD, are driving cross-country in an all-electric Tesla and making pit stops to host public health events. It’s called the Drive for Men’s Health (@drive4men) and Brahmbhatt is using Periscope to extend their reach, scoping the health presentations and more personal, fun interactive broadcasts during their trip.
Already making a difference with Periscope, Brahmbhatt shared a story with me of a female Periscope viewer who encouraged her husband to watch Brahmbhatt’s scopes with her. Doing so convinced him to set a doctor appointment with his primary care provider for preventative health care. In addition, when Brahmbhatt and Parekattil rolled through her town, the viewer invited them to stop by her office and they had an opportunity to meet face-to-face. Following the visit, her female colleagues also were successful in encouraging their husbands to set appointments for preventative care.
A national survey by Orlando Health found that more than 80 percent of men could remember the make and model of their first car, but only about half could remember their last check up with a doctor. Brahmbhatt and Parekattil are definitely making a difference by getting attention from both the Tesla and Periscope.
Periscope at Medical Meetings and Conferences
We’re also seeing Periscope become a part of medical meetings, such as American Society of Clinical Oncology (@ASCO) in Chicago a couple weeks ago. Check out this post from my colleague Christiana Pascale sharing how it went. Also, Mayo Clinic (@MayoClinic) has been experimenting with Periscope, launching it at the Mayo Clinic Social Media Health Network Summit. They also scoped a dedication ceremony of Mayo Clinic Square.
Additional physicians actively using Periscope to check out:
Guest post by: Jared B. Hawkins, Ph.D., M.M.Sc., Research Associate, Boston Children’s Hospital & Harvard Medical School
Social media pervades the U.S. today. Take Twitter, for example. By the end of 2014, approximately one in five U.S. adults were active Twitter users. While the network remains most popular with adults under 50 years old, the last year saw a jump in tweeters 65 and older.
Despite growing privacy concerns, users of Twitter and other networks routinely talk about their health on social media. This has created a large and growing body of data and presented an opportunity to capture ‘digital phenotypes’ that provide tremendous insight into both individual and population health. These phenotypes let us:
Identify individual patients suffering from acute or chronic disease and analyze their behavior over-time
Monitor the health of a population by tracking the prevalence of infectious diseases (e.g., influenza)
Boston Children’s Hospital Computational Epidemiology Group has significant experience with—and has developed new technologies for—automated, informatics-based global health monitoring. This includes research based on social media data; we provided the scientific expertise behind Google Dengue Trends and advised Google on the development of Flu Trends.
In addition, we published some of the first research on using:
• News reports and social media to detect pandemics
• Facebook likes to understand obesity
• Twitter data to monitor emergence of infectious epidemics, like cholera in Haiti
• Twitter data to report news events in real-time, such as the Boston Marathon bombings
• Social media to measure public health sentiment towards vaccine acceptance
We’re going to present new research on sleep disorders and patient experience at Health Datapalooza’s Social Media Data Workshop on June 3. In collaboration with Merck, we’ve explored whether it is possible to identify patients who suffer from sleep disorders, and whether they differ from a control population, based on data from Twitter. Additionally, we’ll present methods for identifying tweets detailing patients’ perceptions of the quality of care they receive in U.S. hospitals and discuss the utility of this novel data stream.
We look forward to a spirited discussion about these and other directions in social media-based health research. For more information and full agenda, please see here.
Follow Dr. Hawkins on Twitter @Jared_B_Hawkins and follow #HCSMdata on June 3 for all of the action? Attending Health Datapalooza? Be sure to register for the Social Media Data Workshop!
As many of you know, we are fast approaching SXSW Interactive. As I’ve mentioned in an earlier post, we will have our 5th Annual PreCommerce Summit on the Thursday before SXSW (March 12). Leading up to that event, I’ve asked a number of our speakers to do brief Q&A blog posts. The questions vary depending on the speaker but you will start to see a common theme emerge.
As a W2O company, BrewLife undoubtedly has adopted the commitment to a true network of care, healthcare that is. While we certainly serve a breadth of clients, we pride ourselves on supporting the biotechnology, pharmaceutical and medical device industries. It is these industries and our clients that make days like February 28, 2015 all the more special. To many it is just another day, but to us, Rare Disease Day® is an opportunity to show our solidarity and support to the network we directly effect.
Rare Disease Day raises awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. Launched by EURORDIS and its Council of National Alliances in 2008, the campaign has become a progressive phenomenon recognized by as many as 84 countries.
Join us and become a friend of Rare Disease Day by completing the form here and utilizing your social channels and/or website to raise awareness. There are no costs involved, just your time and effort. #MakeItHappen by using the hashtag #RareDisease and take a look at three ways you can get involved:
Post Your Event – Whether you’re an individual or an organization viewing this post you can get involved. Post your event using this form on the Rare Disease Day official website.
Raise and Join Hands – This symbolic gesture can be done before the Day or on it to show solidarity with rare disease patients around the world. Record the action and upload it to the Rare Disease Day website here.
Tell Your Story – Whether you are living with rare disease or caring for a loved one or friend who has one, we want to know your story. Upload a photo, video or written story here.
Pledge your support and make your mark on Rare Disease Day, February 28, 2015. For more information, visit www.rarediseaseday.org. Together we can put rare diseases in the spotlight!