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THE SUPER-PATIENTS

ROUNDTABLE

What Effect Are They Having on Healthcare?

With moderator

NEIL GREENBERG, Editor, Healthcare Sales & Marketing

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And Lead Panelist

RANDI REDMOND OSTER Founder and president, Help Me HealthTM

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Our panel of experts:

LARS U. DIEMER

CEO, Agnitio

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ROBIN FARMANFARMAIAN

COO, Arc Fusion Programs VP, Invicta Medical

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GERHARD GALLWITZ

SVP of Product Strategy & Alliances, Treato Over the last decade or so, patients have become increasingly involved in their own healthcare. This is largely due to the explosion of available digital information, along with channels that enhance the doctor/patient and manufacturer/patient communications. Patient advocacy groups have grown in quantity, size, knowledge and influence. The industry is doing its best to keep up with both the avalanche of information (good, bad and meh) and the number of patients and caregivers who have pointed questions about the nature of their care and the presumed alternatives available to them. How has this changed the landscape, and what should we be doing to assist both the patients and the HCPs – who have less time to spend with patients these days, and yet are expected to keep up with the accuracy of information and the technology required to communicate about it? That’s what we asked our panel to explore. Here, then, is some wisdom about a topic that is keeping everyone running hard.

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What has it meant to the industry that patients are more aware, involved and active in their healthcare decisions?

Robin Farmanfarmaian: When patients are engaged in their own healthcare, and they really take an active role in making healthcare decisions related to their care, they are more compliant with the treatment plan, which leads directly to improved outcomes. The reason is that if they feel confident enough to be a decision maker, they really understand their condition, treatment options, and what they need to do to successfully follow through with the healthcare plan. More understanding equals a better ability to carry it out.

Randi Redmond Oster: Gone are the days of a patient asking, “Doctor what you would do if this were your loved one?” Access to information on the Internet and higher deductibles have empowered patients. They now want to feel knowledgeable about their choices. Clinicians, pharmaceutical and device manufacturers need to respond to this need for information by creating educational programs from the patient’s perspective. Patients feel knowledgeable when they understand what is being said, feel they can make informed choices based on their individual needs and know where they can get additional information if they choose. This flips the marketing efforts of the industry from a product feature perspective to a patient benefit perspective.

Gerhard Gallwitz: Patient awareness that they can, and should be, involved and active in their healthcare decisions is really beginning to gain critical mass. For many years the industry recognized the need for patient participation in their healthcare decisions and has now started facilitating that true ownership. Healthcare organizations understand that getting ahead of this growing shift is critical to ensuring not being left behind. They need to be active participants and help shape the narrative.

Lars U. Diemer: There is no doubt that patient expectations have changed, not least that people want to be treated as individuals with specific concerns and needs. I believe that the life science companies have understood this – and are now working to respond. From top-level there is an increased focus on patient-centricity. On an organizational level, patient programs and evolving patient engagement initiatives emphasize the desire to move closer to patients.

Still, there has been an execution gap between the strategies and actually delivering on the promise of patient-centricity. Medical device companies have been really close with patients for years. But now pharmaceutical companies are changing and also starting to make patients a bigger part of decisions, involving them in daily work and co-creating solutions.

What are the upside and downside to the tsunami of information available to patients?

Randi Redmond Oster: Information presented in a way that is clear, concise and compelling can be a huge benefit to patients and their loved ones. Currently, patients feel it can be scarier than ever to cope with a healthcare crisis because they are bombarded with options, medical lingo and siloed thinking. Content created from the patient’s perspective can eliminate any downsides of the tsunami because patients will choose to access information that will make them feel knowledgeable. Patients think holistically: how choices impact their loved ones, their finances and their ability to maintain their quality of life. Patients look beyond the benefits and risks of the solution and think about benefits and harm to their lives. So I suggest that developers of information differentiate themselves by combating the tsunami with patient-centric, clear, concise and compelling information.

Lars U. Diemer: Greater access to information should mean that patient knowledge levels increase, which makes it possible to improve the quality of conversations that people have with their doctors. That’s a really good thing.

But relying too extensively on “Doctor Google” brings a risk that people get wrong information or jump to incorrect conclusions – and this, in turn, affects the conversations that they have with HCPs, though this time negatively.

Correcting misinformation of course puts extra pressure and workload on HCPs. It also means that doctors need to enhance their communication skills and get better support from other stakeholders like industry, to provide credible information. Overall though, it’s extremely positive that patients are more engaged. And it brings real opportunities for pharma to support HCPs with high-value services that help them meet the communication challenges of empowered patients. It just takes a mindset shift, the right processes, and a clever use of data and technology to make it happen.

Robin Farmanfarmaian: The downside is that there is so much to sort through, and some of the information will be incorrect. That is why it is so important for patients to go to reputable sources, as well as understand that they shouldn’t base important decisions on one channel of information. Reputable sources include major hospital systems like the Mayo or Cleveland Clinics, universities like MIT and Harvard, and government institutions like the NIH and the HHS, for example. Patient communities are great sources of information, support, and easy to access. Other good ones include large non-profits and corporations that focus on the specific condition, such as the American Heart Association.

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You do have to remember if you see a treatment that works for only one person, use caution and research before trying it (or before trying anything!). But if a treatment or advice helps a majority or larger number of patients, maybe it’s something to explore.

Gerhard Gallwitz: The amount of content created in the past five years alone is beyond significant. But the downside is that there’s so much of it and patients need partners to help them make sense of all of it. It can be difficult to separate the content that is both relevant and useful to an individual patient. Every patient is unique and what is relevant to one might not be relevant to another patient with the same condition. Right now a patient has to sift through a lot of information and get very granular to figure out what’s most relevant to them. Organizations that help facilitate this “separation of the wheat from the chaff ” will benefit the most.

How can patients separate the good from the bad without spending hours researching every issue?

Gerhard Gallwitz: Bad information or advice will always exist. In most instances the information patients are seeking is not necessarily good or bad – it all crystallizes around what’s the most relevant information for an individual patient. This is a key area of opportunity for the industry, as patients will continue needing information navigation assistance. Tools that enable the ability to see the big picture of the collective patient experience will in turn support better informed decisions.

Randi Redmond Oster: First, the question implies that time is wasted researching every issue. I disagree. Consumers spend time researching major purchases like homes, cars and travel. And even minor purchases are easy to research through retailers like Amazon and Zappos. Why not the same with their health issues? The difference is people have easy access to reliable information they need to make an informed choice about lamps on Amazon, but in healthcare, where the stakes are the highest, finding clarity takes time. Creators and suppliers of reliable, thorough information should be using tools like search engine optimization to ensure their information is the first thing patients see when they sit down and enter the first key strokes on the keyboard.

Lars U. Diemer: Filtering of information is one of the key challenges today. To address this, we’ve found that there’s a huge potential in activating healthcare professionals. In research and workshops we’ve been doing over the past months, it’s become clear that while patients are a lot more involved and engaged especially during pre-diagnosis, they still rely on HCPs for diagnosis and adequate treatment. Doctors are still people’s trusted advisor and therefore central to any communication. It makes sense therefore that HCPs can provide credible information. The only problem is that doctors currently lack the tools to do it. At best, they might have a generic printed patient leaflet.

To support better outcomes – and provide real value to both doctors and patients – I believe we need to empower HCPs with the tools that enable them to communicate effectively. These should use the power of technology to enable precise communication that matches each person’s situation. This kind of information filtering is what technology is really good at. We experience it routinely in daily life, why not healthcare? If doctors can share up-to-date and compliant disease information that matches each individual’s concerns and needs, I believe we can truly impact treatment outcomes.

How should the industry more effectively interact with patients?

Randi Redmond Oster: When my son was ill, I felt isolated and alone. I wanted support but I struggled to find others with whom I could discuss my son’s illness. HIPAA prevented my son’s doctors from telling me that the kid in the next bed had the same issue. I felt like a lone data point. The industry has access to outcomes of thousands of patients which, if their stories were shared with patients, could help build the bridge that was missing for me. Of course, the internet is where patients discover others who choose to share information. A collective site with many users, blogs and comments juried by doctors, researchers and patient advocates would be an ideal site where patients can gain knowledge and no longer feel alone.

Lars U. Diemer: The industry is really learning how to be patient-centric, I believe. There’s an awareness that this means not only focusing on the patient but also looking holistically at the support system that surrounds them – both professional healthcare services and people’s family and friends. Pharma can have an enormous role here. We can enable HCPs to provide relevant, compliant information that addresses not only individual patient concerns but also those of their families and loved ones. We need to have a strong belief in taking better advantage of technology so that doctors get the tools to select relevant patient information together with the patients. And then patients also get the tools to choose what to share with their loved ones so they get the support they need.

Gerhard Gallwitz: The industry could more effectively interact with patients by appropriately tailoring their vehicles of communication and messaging. As an example, DTC advertising attempts to appeal to a wide audience and sometimes is not necessarily relevant to a majority of consumers viewing it. Often times, these advertisements may not offer realistic portrayals of the patient population. For example, the patient using a life-extending cancer drug that has the potential to extend life for three month probably isn’t out in the community playing soccer. The industry needs to talk to patients the way those patients see themselves.

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Who in healthcare is doing a good job of helping and communicating? What does this look like?

Lars U. Diemer: Many organizations are trying to think differently and apply new business models. For many years we have seen med tech companies support HCPs during operations. I’ve recently come across pharma companies taking similar measures – really trying to understand the HCPs as well as the patient. This is an opportunity to get patient-centricity right and co-create solutions that have highest impact. As technology partners, I think it’s crucial that we enable pharma to support HCPs interaction with patients and enable them to more easily respond to individual needs and preferences. With the technology available, things are changing rapidly and this is now possible and being implemented.

Gerhard Gallwitz: Healthcare organizations that are doing a good job at helping patients are the ones that help patients figure out which information is the most relevant to their unique needs. Invariably organizations like patient advocacy nonprofits tend to communicate to patients in a manner consistent with how they view themselves.

Robin Farmanfarmaian: In general, I’m seeing a lot of effective communication and access to their Electronic Medical Records from my doctors now. Allowing online and mobile access to asking questions, scheduling, and interacting is a great way to effectively communicate.

What is the future of the engaged/activist patient? What will they be doing in five years that they’re not doing now?

Randi Redmond Oster: Fasten your seatbelt. In five years patients will demand more control and they will be comparison shopping. It will be unacceptable to not know how much each item costs, what is and is not covered by insurance and the safety ratings of products used in treatment. Patients will make choices based on this information. If the information is not available, they will go to a provider who will give it to them. Kodak thought people would always use film, Blockbuster thought more stores were the answer, and GM believed Americans would be loyal to “made in the USA.” The transition to an engaged/activist patient will happen faster than insiders expect. If the medical industry does not build patient-centric tools, start-ups will.

Robin Farmanfarmaian: In five years, engaged patients will be collecting a lot more data about themselves, and they’ll be doing it more seamlessly, such as with epidermal electronics (like temporary tattoos) or subcutaneous sensors (under the skin). A lot of this will be FDA approved, clinical-grade data about their sleep, vital signs, blood levels, glucose, sun exposure, hydration levels and more. All this data will aggregate into an online patient dashboard, in easy-to-read graphs that will alert you only if there is a problem. This data will be able to be seamlessly shared with healthcare professionals, friends, family and more, when the patient wants to share it.

Gerhard Gallwitz: The future engaged patient will use technology tools that enable real-time access to their full set of medical records. This portable information will allow them to compare and contrast their medical record “data” directly with the information they are finding online through other patients sharing their experiences. They will essentially be combining science with art. The medical records will be the science where the art will be the crowd-sourced user experiences. By meshing the two together they will be able to gain deeper insights to inform their healthcare decisions.

Lars U. Diemer: It’s highly likely that the new disruptive business models that are affecting society in general will increasingly impact healthcare. Sharing economies will likely provide the opportunity for new players in healthcare. As individuals we’ll get involved in innovations based on crowd-funding and micro-loan type models. We’ll also rely even more extensively on peer-to-peer analysis and reviews. Similar to how we rate our vacation, restaurants or commodities, we now have access to hospital ratings in government funded consumer reports. This is a big move and strongly suggests that in five years patients will get more heavily involved in co-selecting and co-creating communications and solutions.

What patient trends do you see in the industry?

Robin Farmanfarmaian: A trend I’m seeing is that patients want more data on themselves – that’s why we’re seeing wearable technology on a major upswing. Patients are buying these devices on their own, at stores like Apple, Amazon, and other untraditional healthcare channels. This is a shift in processes, because patients are coming into the clinic with data on their own, versus getting data only taken at the clinic, such as blood pressure and blood oxygen levels.

Lars U. Diemer: I believe that the industry is realizing that to improve treatment outcomes drastically it’s key to understand that healthcare is a complex ecosystem. To get it to work, all stakeholders (payers, hospitals, nurses, doctors, relatives, NGOs) need to play together. This means providing technology solutions that enable pharma to work more holistically – providing not only increased scale but also value to everyone involved at an individual level.

What new tactics are being deployed to help doctors communicate better with patients without increasing the time they need for an appointment?

Lars U. Diemer: There is a gap between the billions pharma invests in new products and the actual outcome. A Novo Nordisk study done a few years back showed that only 6% of diabetics were actually in the right treatment and adhering to it. At the same time, HCPs are really frustrated that they don’t have the time and the tools to provide better services to their patients. This stresses that there is a huge opportunity in maximizing treatment outcomes.

We have to work to extend the traditional focus of pharma-to-HCP communication to include digital patient communication controlled by physicians. Imagine a new psoriasis patient that’s just been diagnosed by his doctor. During the consultation the doctor has access to relevant and compliant digital materials from both pharma and other independent sources. Together with the patient they then select relevant information to support the patient after the consultation. The patient then accesses the information on a personal app.

How much is marketing migrating to social media and the internet instead of mass advertising to target the message for prospective users?

Gerhard Gallwitz: Social media and the Internet enable micro-targeting specific patient populations. Mass advertising will continue to be appropriately utilized. Certain organizations will shift their spending to the most appropriate tool for specific patient communications and messaging. Disease-centric marketing will also continue to drive whether social media/Internet or mass advertising is utilized. For example, using social media and the Internet for marketing to patients with Stage 3 NSCLC makes perfect sense. On the other hand, mass advertising may be the most appropriate marketing activity for ED, where the goal is to message to the largest patient audience possible.

Lars U. Diemer: We’ve seen pharma investing a lot more in digital channels, partly because this is where people now spend their time but also for the other benefits it brings. Pharma companies that have worked with social media know how important social media listening and involvement is in order to really understand patients – both to better appreciate needs and for specific issues like adverse effects for example.

I am sure healthcare communication will continue increasingly becoming digital. What’s important is that this technology results in people getting the healthcare information that they personally need that’s delivered in a way that’s right for them.

MEET OUR MODERATOR

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RANDI REDMOND OSTER

Founder and president, Help Me Health™

Help Me Health’s mission is to transform how healthcare thinks about the patient experience. She is also the award-winning author of Questioning Protocol, which helps patients navigate the healthcare system and medical professionals understand the patient perspective. Randi spent the first 18 years of her career at GE working on complex aerospace systems and building profitable financial services businesses. The skills gained at GE empowered her to effectively navigate the healthcare system for her son, find opportunities for process improvements for hospitals and launch Help Me Health.

MEET OUR PANEL OF EXPERTS

LARS U. DIEMER

CEO, Agnitio

Lars is driven by the challenges of marrying the patient-centricity ambitions of pharma with the needs of the empowered patient – all to the benefit of society. He believes this will improve treatment outcomes, with technology playing a vital role. As Agnitio’s CEO, Lars is responsible for transforming this vision into exciting products and services that help doctors help patients. Prior to joining Agnitio, he served in several international roles at Cisco and McAfee before embracing the Internet of Things and Big Data in a number of start ups. The companies in which he served have collected numerous awards including winner of the 2010 National Gazelle Award contest for profitable growth (Denmark) and of the 2011 President’s Award for Best IT Company (Lithuania).

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ldi@agnitio.com  

Agnitio creates digital communication solutions for the life sciences. Their work is anchored in the belief that technology can make industry communication more relevant for healthcare professionals and patients – and thereby help improve treatment outcomes. The company’s most recent solutions include Rainmaker, which provides state-of-the-art multichannel HCP engagement, and Sharedoc which makes possible fully-compliant patient communication.

ROBIN FARMANFARMAIAN

COO, Arc Fusion Programs VP, Invicta Medical

Robin Farmanfarmaian is an entrepreneur, founder, professional speaker and best selling author working in cutting edge technology and medicine. As COO of Arc Fusion Programs, she works on the fusion of medicine, science and IT, and is also a VP at INVICTA Medical, a device company for sleep apnea. A lifelong philanthropist and mentor, Robin is the Co-Founder and on the Board of Directors (formally Executive Director) for the Organ Preservation Alliance, catalyzing breakthroughs in organ banking for transplants and tissue engineering, and President for the Innovation for Jobs Summit, finding solutions to disrupt unemployment. Robin is on the advisory board of many startups and conferences, and mentors female entrepreneurs. Her previous work includes being one of the founders of Morfit, the Exponential Medicine conference, and a VP at Singularity University. Her book, “The Patient as CEO: How Technology Empowers the Healthcare Consumer,” is a #1 Best Seller on Amazon.

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ThePatientCEO@gmail.com  

INVICTA Medical has invented a disruptive non-invasive therapeutic solution for major sleep disorders. The technology predicts, monitors and treats sleep apnea, snoring, and upper airway collapse with no known side effects. INVICTA is currently in clinical testing in Silicon Valley in Northern California.

GERHARD GALLWITZ

SVP of Product Strategy & Alliances, Treato

Gerhard brings two decades of experience increasing organic growth, targeting acquisitions and developing key partnerships on behalf of companies in the life sciences, technology and services sectors. Prior to joining Treato, Gerhard was Vice President Product Management & Analytics at Epocrates. He has also held senior executive roles at IMS Health, where he was responsible for managing several of the company’s largest and most profitable business units. Earlier in his career, he spent time in positions of increasing responsibility at Wyeth (now Pfizer). Gerhard holds a B.S. in Chemistry from the University of Delaware and an MBA in Marketing & Finance from Rutgers University.

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Treato™ is the leading source of health insights from millions of real health consumers. It uses patented analytics and big data technology to turn billions of disparate online conversations into meaningful social intelligence. With more than two billion posts analyzed and continuously expanding, Treato has partnered with 9 out of the world’s top 10 pharma companies as well as numerous other multi-national pharmaceutical companies and healthcare organizations. Treato.com, its consumer website, helps millions of visitors each month. Treato is privately held with offices in Israel, New York and Princeton, NJ. Investors include Reed Elsevier Ventures, OrbiMed Partners and New Leaf Venture Partners, among others.

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Written by hsandm

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