MAY IS CYSTIC FIBROSIS AWARENESS MONTH!

MAY IS CYSTIC FIBROSIS AWARENESS MONTH! 

brought to you courtesy of the Cystic Fibrosis Research. Inc

This week we seek nominations for our CFRI Volunteer of the Year Award as well as our CF Professional of the Year Award, provide research updates, invite you to our 28th National Cystic Fibrosis Family Education Conference, continue our search for “CFRI Ambassadors,” announce the online posting of our Pediatric CF Education Conference, promote clinical trial opportunities, and share our other exciting programs and events!

SEEKING NOMINATIONS FOR CFRI VOLUNTEER AND CF PROFESSIONAL OF THE YEAR

Two prestigious awards will be presented at CFRI’s 28th National Cystic Fibrosis Family Education Conference on August 1, 2015. The Dave Stuckert Award will be presented to a CFRI volunteer who has made outstanding contributions to the CFRI community through education, outreach and support. The CF Professional of the Year Award will be presented to an individual who has made an outstanding contribution in the field of cystic fibrosis through education, outreach, support, medical expertise, clinical practice, or research. Please send your nominations of 100 - 150 words or less to Siri Vaeth Dunn atsvdunn@cfri.org by June 30th. For more information, please click here.

RESEARCH UPDATE

▶ CF researchers in the UK will livestream the announcement of their landmark gene therapy trial on May 30th. In a rare move, researchers will take the results of their research directly to the CF community. Hosted by the Cystic Fibrosis Trust, scientists will share the much-anticipated results of the eight-month clinical trial that evaluated Wave 1 CF therapy, in which a corrected copy of the gene related to CF is inserted to substitute for the defective gene. After the webcast, Professor Eric Alton – who will be familiar to those who heard him speak several years ago at CFRI’s annual education conference – will answer questions from viewers. For more information, click here.

▶ Researchers from Oregon State University (OSU) in Corvalis and Aradigm Corporation have announced the results of their study of the effectiveness of Lipoquin® and Pulmaquin®, investigational drugs for the treatment of non-tuberculous mycobacteria (NTM). While NTM is very common in the environment, for those with cystic fibrosis it often causes severe pulmonary infections, the most common symptoms of which are fever, cough, hemoptysis, weight loss, fatigue, and night sweats. Pulmonary NTM infections can cause irreversible bronchiectasis. Results of the study with mice demonstrated that the use of Lipoquin ® and Pulmaquin ® reduced the growth of the bacterium. Said Dr. Luiz Bermudez, professor of Biomedical Sciences at OSU, "I am very pleased that the encouraging effects of Lipoquin and Pulmaquin against PNTM in the biofilm and macrophage in vitro assays have been confirmed with this short treatment in our animal model. This test system was previously evaluated and demonstrated to provide results comparable to the results obtained in humans.” Studies will continue with this promising therapy. For more information, click here.

SUPPORT CFRI!

▶CFRI’s 40th Anniversary Gala, to be held at the stunning Carolands chateau on September 25,will feature gourmet small plates, fine wines and champagne, fabulous entertainment -- including Tammy Nelson from Beach Blanket Babylon in San Francisco --  and an exciting live auction! Please join us at one of the most beautiful properties in the state! This event is expected to sell out. To purchase tickets, or to find out about the many sponsorship opportunities available, click here. All funds raised will support CFRI’s CF research, education and support programs. Generously sponsored by NBC Bay Area, Vertex Pharmaceuticals, AbbVie, and Chiesi USA.

▶CFRI Continues to Seek Ambassadors! CFRI’s office is in California, but our reach is global. We need your help as a CFRI Ambassador in your community. As an ambassador, you would actively work with your CF center to distribute CFRI materials, and discuss CFRI’s programs with your fellow patients, caregivers and members of the care team. You could also present at your center’s CF Education Day. Providing presentations/discussions about CFRI and our services to a group of 10 or more friends, patients, associates, business/service groups, etc. is also vital. Those of you who live outside of the United States are also encouraged to participate! For more information, contact Mary Convento at mconvento@cfri.org.

▶Mother's Day may have passed, but the ability to honor mothers and help support CF research and education has not! Please join us as a Tea Sender, and help us to reach our goal of $175,000. Pleaseclick here or call 855.237.4669, and we will send you everything you need, including beautiful invitations, teabags, CFRI information, and more. CFRI's Mothers' Day Tea lasts far beyond May 10th; you can send invitations to your friends and family in the weeks to come asking them to enjoy a cup of tea, while reflecting on loved ones who live with cystic fibrosis. This reflection is capped off with a donation to CFRI in support of our research, education and support services to the CF community. We look forward to hearing from you! Please note: if you prefer to participate in a virtual tea, you can click here for more information.

OTHER PROGRAMS & SERVICES FOR THE CF COMMUNITY

▶ For those you who missed CFRI’s inaugural Pediatric CF Education Conference, held on May 16, you may now watch the presentations online! Topics include updates on the CF pipeline, transition for adolescents, respiratory therapy tools of the trade, and nutrition tips, all presented by some of the most renowned CF experts in the SF Bay Area. To watch the conference presentations, click here. 

▶Please mark your calendar for the next CF Caregivers Support Group on Tuesday, May 26 from7:00 pm – 9:00 pm PST. The group meets at CFRI’s offices, but participants from across the country are encouraged to phone in and participate. Facilitated by Sruthi Veeravalli, MSW, the support group is part of CFRI’s Cystic Fibrosis Quality of Life (CFQoL) Program. To participate by phone, call 1-860-970-0300, and type in code 7738539#. Click here for a support group flyer. Please share with others. Made possible by Vertex.
▶FREE counseling services available to the nationwide CF community! We are currently supporting services in 8 states! As part of CFRI’s CF Quality of Life Program, a Living Legacy of Peter Judge, CFRI will cover the cost per individual counseling session with your selected therapist. There is no charge to you! Thanks to Vertex, this funding is available through August, or when all funds have been expended, whichever comes first. Your selected therapist MUST contact CFRI prior to providing each subsidized session. For more information, click here or call CFRI at 650.404.9975. Made possible by Vertex.
▶Teletherapy services! For those people interested in individual therapy, for whom traveling to a therapy session is not feasible, CFRI will underwrite HIPPA-compliant teletherapy sessions with licensed therapists. If you are interested in learning more about this program, and/or to receive a referral to a participating therapist, call Siri Vaeth Dunn at 650.404.9445. Made posssible by Vertex.
▶High school seniors and college students: It’s scholarship time! The deadline for the 2015 AbbVie CF Scholarship is May 27th. For information about this scholarship, click here. For information on the many other scholarships available to the CF community, click here.

CLINICAL TRIALS: STILL RECRUITING!

▶Dr. Terry Robinson and Dr. Carlos Milla at Stanford Hospital are currently recruiting participants in California for a study to evaluate the effectiveness of a noninvasive lung function test, the Lung Function Index (LCI), as an effective screening tool for detecting early CF lung disease. The LCI results will be compared to CT scan results. If the LCI is able to effectively screen for early lung disease, it would limit the number of CF infants and toddlers needing more comprehensive chest CT evaluation. The goal is to enroll 30 CF infants/toddlers and test them over the first year. Follow-up testing would then be 2 years later. Testing will include LCI measurement and low-dose Controlled Ventilation Infant CT scan. For more information, call Colleen Dunn at 650.736.0388.

▶AbbVie is sponsoring a long-term observational study in cystic fibrosis patients who are participating in the Cystic Fibrosis Patient Registry to assess the occurrence and risk factors for a rare bowel disorder called fibrosing colonopathy (narrowing of the large intestine). Patients will be followed at their regular clinical care visits over a 10-year period and approached if they develop symptoms of fibrosing colonopathy for collection and use of further detailed information. For more information, click here.

▶PTC Therapeutics is enrolling over 200 patients with a CF nonsense mutation (nmCF) at research centers worldwide in the Ataluren Confirmatory Trial in CF (ACT CF). For more complete inclusion and exclusion criteria, click here. 

▶Vertex Pharmaceuticals is currently recruiting participants with CF who are homozygous for the F508del-CFTR mutation for a multicenter Phase 3 clinical trial designed to evaluate the efficacy and safety of VX-661 in combination with ivacaftor.  For a complete study description, please click here.

▶Dr. Jeff Wine is still seeking subjects who do not carry a CF gene for his study. Participants must live in the SF Bay Area. For more details, click here for a flyer, email wine@stanford.edu or call 650.725.2785.

▶Study: Osteopathic Manipulative Medicine (OMM) and CF Bowel Issues: A study exploring OMM and its impact on CF bowel obstruction (constipation) is currently enrolling participants. OMM is a gentle physical manipulation that has been shown to improve bowel function. Participants will earn $200 for participating.  For more details, click here, or contact Sara Modlin at sara.modlin@tu.edu or 925.456.4519.

THE DEATH OF MEDICAL PRACTICES

NEW DOCs  'Practice Closing"  "Practice for Sale"

At one time medical graduates would scour medical journals or other sources for this announcement.

Consider the chagrin and desperation of many physicians who have worked for 35 or more years building a medical clinic or practice. One that on the surface is thriving.

The solo practitioner is at a serious disadvantage when retiring. He has several options:

1. Close the doors, walk away and sell assets at auction or to another physician
2..Sell the business to a young physician, hospital or a large group.
3. Bring in an associate several years prior to retiring, and work part time for the new graduate.

Advance planning is critical, however given the volatility of marketplace economics and the rapidly changing environment even the best plan may fail.

It is a SAD fact. Most physicians take great pride after they have built a medical practice, developed a stellar reputation, work very hard for  30 or more years, and leave a legacy business intact for a community  At one time a retiring MD had not only the assets of the practice, it also had considerable cash value in "goodwill"  The ongoing inertia of a practice and the implied recommendation by the former physician are enormous. It carries with it a cash flow from ongoing patients, their family and friends. In some cases  'goodwill' was larger than the capital assets of the medical business.

Today 'goodwill" is almost meaningless. Health Reform and the rise of group medical practice is like the battleship of medicine vs the PT boat. While the PT boat can be nimble on it's feet and change direction according to circumstance, it can easily be rammed or swamped by the battle ship.

The legacy of a medical practice may wind up in a classified ad, or an auction block.

Today many older physicians fade away, remembered only by colleagues and grateful patients.

Knowledgable physicians know they will not become rich as MDs.  They will always be in demand, however they may or will become the civil servants of society,paid a  handsome wage compared to most workers, and will have sacrificed their autonomy in a rigid oppressive heath system.

Other businesses such as restaurants, tire dealerships, fast food franchises, and thousands of mom and pop enterprises can sell and use their business as a considerable retirement asset.

Most people do not know that many many physicians are unable to save for retirmenent due to increased operating expenses, decreased reimbursements, or early disability.

Earning and using an M.D. is no longer the  guarrantee of life long security..

It's the patient's loss as well.

What is Kevin Spacey doing on the Health Train Express ?

My colleagues know I am involved in social media and author two of blogs.  I realize I am no expert on social media (contrary to some of my physician colleagues on #hcsm) I have no certificates on my wall.

Kevin Spacey was invited to speak at a   'Content Management" meeting as a keynote speaker. He was as brilliant as he is  on "House of Cards".

What I do here on Health Train  Express and Digital Health Space is tell a story about health reform and health information technology.

Story telling is an art form. Spacey outlined the three necessary components of a story.

The story is everything

"1. Create Conflict

First and foremost, in order to tell a riveting story it must include a good conflict. Conflict creates tension and tension keeps people engaged, according to Spacey. “Our stories become richer and become far more interesting when they go against the subtle order of things to achieve something different and effective,” he said in his Content Marketing World 2014 speech. When it comes to conflict though, it must be genuine. The conflict should drive the overall story and affect how characters react. It should also inspire an audience to engage and react with the storyline.

See also: 5 Things You Can Do in 5 Minutes to Promote Your Content

2. Be Authentic

The second most important part of good storytelling is authenticity. He even quoted a fictional man well-known for speaking his mind to emphasize the importance of being authentic, House of Cards’ Frank Underwood: “There is no better way to overpower a trickle of doubt than with a flood of naked truth.” Spacey said when marketers embody a certain honesty they are more likely to create great campaigns. In order to be successful in content marketing, we must stay away from what’s predictable and already been done before. We have to be honest, genuine and stay true to our brand and voice. We also shouldn’t be afraid to take a risk and have a strong voice.

See also: How to Give a Content Writer Good Feedback

3. Value Your Audience

Finally, good storytelling can’t happen without valuing and understanding your audience. “As storytellers, we are nothing without our audiences. We must constantly strive to build our audiences and give them content worth sharing,” Spacey said. Good content marketers should always be listening and responding to their audience’s wants and needs. If we aren’t doing this, we’re just creating content to create content and contributing to the rest of the noise."

So.....what does this have to do with blogging and Health Train Express ?

" Content Marketing" has flipped the model. It has created a space where Hollywood is coming to it rather than producing it's own content, innovators and forward thinkers are being asked to use their facilities to produce content for YouTube, Scripted,  and other platforms such as Copromote

How

Does Health Train Express fit this model?

1. Conflict is everywhere in health. It has increased exponentially, exploding into the most common form of health news, Health Reform, Health Information Technology, and Health economics. 

2. Authenticity has been a pillar of Health Train Express, beginning in 2004 when our first articles were on the development of Health Information Exchanges, and Regional Health Information Organizations. Articles based  upon credible sources, other blogs, established print media and content from professional meetings, government sources. It must be newsworthy and preferably 'breaking news'.

3 Value your Audience, goes without saying but must be mentioned.

            

          a. Who is your audience and  understanding your audience.

          b. Interactivity with your readers and open to comment.

          c. Provide linkage to other important and related information.

There are no more enthusiastic sources for your blog than enthusiasts who follow you.

How to Find Evangelists in Your Audience

1. Excel at Your Service

Think about the best steak dinner you ever had in your entire life. In all likelihood, you told a bunch of people about it. Had it only been an average steak dinner, you probably would tell no one about it. It was okay, but not up to a recommendation. Whatever your product or service is, excel at it first.

2. Show Appreciation to Your Repeating Readers (ie, interact with commentary)

Find your customers and show them how much you appreciate them. If you have a “fan page” or a Google+ page, offer your followers a special deal every now and then. A steak restaurant may offer a free dessert to anyone who mentions the page or blog where you announced the special deal.

3. Listen & Respond to Complaints

Do all you can to make the situation right. Admitting that an article contained a mistake or was challnged, then fixing it for the reader will enhance your reputation on social media and convert a disappointed reader and follower into an evangelist, along with others who read your reviews. You must maintain a positive reputation on social media.

4. Leverage Your Readers

Your employees can be evangelists or at least emissaries. This requires a two-step method that authors needs to implement. First, they need to love where they work because they are treated with respect and feel valued by their readers. The second is that they need to be well-trained in social relationshiops and praised when they have done something routine that makes a follower happy.

.

5. Quality Over Quantity

It’s better to focus like a laser on a small number of topics in order to make it manageable for you to build a personal relationship. Communication with you for any reason should be easy, so make sure they know how to reach you if they believe they need to. Publish less, and publish with authority.

Evangelist marketing is one of the few marketing efforts that start with the reader

rather than yourself. It is a form of word-of-mouth marketing. When you identify a potential evangelist, ask for a testimonial. When you do this, you are letting these key people know that you appreciate them as your customer.

Evangelists are credible with their peers and can be more influential than a celebrity endorsement. They are underused resources that, if nourished and developed, are the key to growing your business.

The final words from Kevin Spacey,

"Hunt, or be hunted"

        

Patient Engagement has been dubbed the Blockbuster Drug of the 21st Century

The healthcare market is transitioning to a consumer-driven health market that could cut hospital inpatient expenses by 40% percent over the longer term. There has been an explosion of Patient Generated Health Data (PGHD) as well as care coordination platforms that will enable specialized "smart care" teams to excel at chronic disease management, prevention and non-acute interventions.

Patient engagement holds the promise of improved health outcomes, better patient care, and lower health care costs. It is of great value to patients by stimulating positive patient behavior, by providing real time patient education and by facilitating shared decision making with clinicians. As our population ages, it makes it enables family members’ to provide support for elderly patients.

Rather than depersonalizing health care, HIT may promise to make it more patient-centered, with the caveat "If you build it , will they come ?"  Early studies reveal that the majority of Americans fail to use HIT.  In a previously published post, 

Join us to learn about the key elements of a Patient Engagement Framework and the Patient Engagement Journeys at Intermountain Healthcare and El Camino Hospital.

Webinar Registration

Third Annual Patient Engagement Summit

Patient Engagement Framework

White Paper-pdf download

June 4, 2015
8:30 AM -  4:00 PM , PT

UCSF Mission Bay Campus
Genentech Hall
600 16th Street
San Francisco, CA 94158

Agenda and Speaker Bios

The vocabulary and eponyms of the 21st Century Health Space have changed.

The Bioprinting Process for skin

L'Oreal is partnering with 3D bioprinting company, Organovoto take their current skin farming to the next level. L'Oreal currently grows its own skin for testing beauty products and formulations. It is a necessary step before releasing products to market, so L'Oreal can see just how safe and effective its formulas are. Organovo is an industrial bioprinting company that 3D-printed artificial veins from living tissue in 2010.

Evena Medical is the maker of a medical device that allows nurses and doctors to view the veins beneath one's skin, with the original device it created having been deployed a while ago and involving the movement of a large contraption. Because of the device's size, it both made the act of giving and IV easier and more cumbersome, something the company's latest invention should fix. The Evena Eye-Onsmart glasses offer the same skin-penetrating view, but are entirely portable.

The original device had a swing-out armature with a display that showed the patient's veins, which you can see in the image below. The portable glasses provide much the same visual, but as a wearable device that is akin to Google Glass and other similar devices. The use of glasses makes use of the technology within clinics and hospitals easier, not to mention removing the hassle of transporting the unit around.

It is interesting watching the glasses in action, since they are able to visualize the movement of blood in real-time, which is demonstrated in the video below. The technology on board comes from Epson's Moverio smart glasses technology, and is accompanied by some other tech, among them being storage in the glasses that allows a patients unique vein patterns to be stored.

‘Measure Yourself Medical Outcome Profile’

‘Measure Yourself Medical Outcome Profile’, what does that mean?

"The Quantified Self, or Patient Centered Medicine.  MYMOP, and QSPCM are terms designed around self monitoring using standard items such as scales, blood pressure measurements, blood glucose levels and other markers of health.  Predictions are that many of these markers will be monitored remotely by high tech devices such as wearable wi-fi remote monitors, and using skin applied tattoos with embeded micro circuits.  Some of these are already in development.

These terms developed simultaneously with the passage of the affordable care act, and the formation of accountable care organization.

The Quantified Doctor: Integrating Self Tracking into Medical Care #QS2012 from Paul Abramson MD

24/7 Tracking

The idea behind the quantified self movement is that either through manually tracking or the kind of 24/7 tracking that can be achieved by wearable tech with little to no input from the patient, data about a patient’s state of health can be collected in real-time and then analyzed to help get a more quantified picture of their overall health. Through specially designed computer algorithms and statistics, linear regression can be used to assess the quality of the data and find correlations between variables that might bring about key insights into a patient’s lifestyle.

What to Track?

Factors like caloric intake, number of hours of sleep, activity level and even blood pressure and body temperature can be gathered on a daily basis for years, meaning that the wealth of available data for the patient and their healthcare team is larger than ever before. There is practically limitless potential for this data to help healthcare providers and their patients make connections between lifestyle and health, perhaps even discovering never-before known correlations that could lead to treatment innovation and perhaps even cures for conditions.

Particularly with the advent of wearable tech, it’s not only practical for patients to collect the data, but easy. As the technology continues to expand and improve, even the cost to acquire a piece of tech, whether in the form of a wristband or a phone, continues to lower as well. Meaning that a larger demographic of patients will be able to afford the technology and integrate it seamlessly into their everyday lives.

Data Tracking = Key Metrics for Physicians

For physicians, the data of the quantified self movement will be priceless. Self-reported patient activities, particularly when it comes to lifestyle, are notoriously unreliable. Patients don’t always intend to be inaccurate historians, but for simply asking a patient to track their caloric intake, blood pressure reading or blood sugar welcomes in human error.

Certainly patients may also feel pressured to exclude instances where they have sidestepped treatment recommendations or not met their targets, making the data moot. In some cases a physician may not even be sure what data would be the most helpful, but by having the input from wearable tech they can get an overview first and then assess what measures may warrant a more in-depth examination.

The Ultimate “Life Hack?”

Techies are also promoting the idea that having patients track their data this intently is the ultimate “life hack”: having such a wealth of information at their fingertips means they can’t deny their state of health; hard data doesn’t lie. The concept of self-knowledge and data gathering isn’t new by any means: Benjamin Franklin quite famously journaled daily in the hopes of achieving self-improvement through self-awareness. But he didn’t have a FitBit to help him.

Technology has made the concept of the quantified self more accessible and computer technology combined with advanced statistics will not only change the way we practice medicine, but most likely contribute to population health recommendations for years to come.

Are Patients Already Tracking Their Data?

Almost 70% of adults track and report least one health measure; but half of them are trying to do it all in their heads, meaning that the data is likely unreliable. Patient participation, of course, is of utmost importance but these patients also need to be working with physicians and healthcare providers who are open to incorporating and helping them analyze the data as part of their treatment.

Genetic Sequencing

An even deeper approach to self-quantified patient data has come in the form of genetic sequencing, which has now become more available to consumers through companies like 23andMe. Patients now have genetic data available to them that can tell them everything from disease risk to natural immunity to illnesses like Norovirus.

They can also make connections between their family history and their actual genetic risk for conditions later in life, like heart disease. Taking this information and pairing it up with their current health data can help patient’s prioritize their lifestyle changes according to what conditions they are most at risk for developing.

Exciting Changes in Healthcare with Wearable Tech

Quantifying a patient’s life has already begun to change the way we practice medicine, and it reaffirms the partnership between patients and their healthcare providers that’s being promoted in patient-centered medical homes. It may not be the right choice for every patient, but it may be one way to engage certain demographics that have been difficult to engage in the past, particularly young people who, glued to their phones, might be the perfect market for wearable tech.

Engaging these patients in the research and development of these tools may be the most exciting healthcare development of the next decade, and certainly this year.

Emerging Patient-Driven Health Care Models: An Examination of Health Social Networks, Consumer Personalized Medicine and Quantified Self-Tracking

Emerging Patient-Driven Health Care Models

Three emerging patient-driven health care models are now discussed in detail: health social networks, consumer personalized medicine and quantified self-tracking.

2.1. Health Social Networks

2.1.1. Health social networks introduction

Social networks have become a powerful tool for bringing people with shared interests together to interact. In addition to general social networks (examples: FaceBook, MySpace) and career social networks (examples: LinkedIn, Plaxo), more specific purpose-driven social networks are emerging. In the Finance 2.0 area, social networking has become an overlay or a property of asset and expense management websites like Wesabe, Mint, Zecco, Cake Financial and Expensr. In the health space, over twenty health social networks have launched in the last few years including PatientsLikeMe, CureTogether, DailyStrength, MedHelp, HealthChapter, MDJunction, Experience Project, peoplejam, and OrganizedWisdom (Table 1 has URLs for all health social networks mentioned).

2.1.2. Health social networks definition

A health social network is a website where consumers may be able to find health resources at a number of different levels (Figure 2). Services may range from a basic tier of emotional support and information sharing to Q&A with physicians to quantified self-tracking to clinical trials access.

One key value health social networks provide is the potential to find others in similar health situations and share information about conditions, symptoms and treatments. A health condition is a particularly strong affinity and the collective learning and experience of others can be leveraged and shared to help individuals make decisions. Health social networks are primarily directed at patients but caretakers, researchers and other interested and knowledgeable parties may be able to participate.

The largest and best-known health social network is PatientsLikeMe, which started in 2004 and had, as of December 2008, 26,059 patients (http://www.patientslikeme.com/all/patients). Also as of December 2008, membership was growing 10% per month with the company having the goal of reaching one million patients encompassing 200 different diseases by 2012 [5]. 5% of all amyotrophic lateral sclerosis (ALS) patients in the U.S. are site members; this is the largest current existing data set on the disease [6].

To date, health social networks have been focused mainly on medical conditions for which cures are sought, although some websites have user communities for healthy living. Some health social networks serve as a point resource for over 700 conditions (examples: MDJunction, HealthChapter) and in fact, a key benefit of health social networks is that they can offer a more comprehensive look at a patient’s health by covering a deeper and broader range of conditions than is expedient for traditional medicine. Other health social networks focus on fewer conditions more profoundly (examples: PatientsLikeMe, CureTogether), using additional functionality such as quantified self-tracking and collaborative filtering to identify potentially related conditions patients might be experiencing and match patients in similar situations. Collaborative filtering has been identified as a critical mechanism in facilitating patient information-seeking and trust-building in Internet health models [7].

2.1.3. Services provided by health social networks

This section has an in-depth review of the services provided by health social networks: emotional support and information sharing, physician Q&A, quantified self-tracking and clinical trials access.

Emotional support and information sharing

The basic services offered by the majority of health social networks are a mix of emotional support and information sharing at no cost to registered site users. Some health social networks may emphasize one area more, such as information and research citations (example: OrganizedWisdom) or social connection and support (example: DailyStrength). Websites may auto-populate general condition information from Internet health resources such as Wikipedia articles and PubMed links. In addition to the general information, patients may be able to enter qualitative and quantitative data about their own conditions, symptoms, treatments and overall experiences.

Emotional support, social support and patient empowerment are important components of health social networks, available both implicitly and explicitly. Implicitly, emotional support is experienced by seeing that there are others with similar conditions, that “I am not alone.” Implicit emotional support is also felt by being a community member, participating in the process of creating a personal profile (Figure 3) and recording health information, seeing how other non-medical professionals describe the same conditions and symptoms and finding out what remedies others have tried. Emotional support is also offered explicitly in some health social networks through user interaction. Site members may have the ability to comment on forums, publicly or privately message each other, give each other advice and transmit lightweight social greetings, such as hugs, as shown in excerpts from DailyStrength’s activity feed (Figure 3).

The impact of emotional support and patient information sharing is thought to be quite positive but is not fully understood yet. PatientsLikeMe has conducted some research, finding that “patients who choose to explicitly share health data within a community may benefit from the process, helping patients engage in dialogues that may inform disease self-management [8].”

Physician Q&A

A second service offered by several health social networks (examples: MedHelp, WellSphere, MDJunction, ehealth forum, iMedix, WeGoHealth) is the ability to pose questions to physicians. Questions and responses are usually displayed publicly unless the patient marks them as private. Posing questions may be free or fee-based, for example at MedHelp, it is $22 to pose a question to a physician directly and free to post a question in the medical communities where peers or professionals may respond. The websites generally have doctor profile pages where physicians complete information about their expertise, background and affiliations, with links to previous question responses on the site and possibly their medical blog entries (Figure 4).

This transparency and willingness to interact helps to start changing the image of doctors as 10-minute diagnosticians to accessible collaborators in care. Many doctors are willing to answer questions and recommend next steps, and possibly provide a preliminary and well-caveated diagnosis. Even this basic mechanism of lightweight doctor-patient interaction could help ease burdens on the health care system. The conventional wisdom may have been that physicians would not take part for legal, reputational and other reasons but the key point is that they are willing to participate and in fact may find reputational enhancement and other benefits.

Quantified self-tracking

A third type of service offered by some health social networks (examples: PatientsLikeMe, CureTogether, MedHelp, SugarStats) is quantified self-tracking. The self-tracking functionality consists of easy-to-use data entry screens for condition, symptom, treatment and other biological information. The information can then be seen in a graphical display, possibly with views by individual, aggregated population or custom groups.

For example, Figure 5 shows a detailed patient profile from PatientsLikeMe including disease progression, prescription drugs and symptom tracking for a 37 year-old male who has had ALS for six years, and Figure 6 shows an aggregated view of the top treatments tried by the CureTogether endometriosis community. Individual tracking data, medications and other relevant information can be printed from the websites to expedite interaction at in-person doctor visits.

Self-tracking information is further incorporated into the PatientsLikeMe site by mapping the data to a graphical representation of the patient as shown in Figure 7, a stick figure shaded with different colors per symptom severity and disease stage so anyone looking at the profile can assess the patient’s status immediately. Figure 7depicts two patients with ALS, one with arms onset (top diagonal line) and one with bulbar onset (bottom diagonal line), tracking their condition progression by year (x-axis, years 0–10) and decline in Functional Rating Scale (FRS) (y-axis, 0–45). The site’s collaborative filtering allows users to find “patients like me,” which is important since similar others are the most relevant for providing and sharing information.

Clinical trials access

A fourth type of service offered by some health social networks is information regarding clinical trials. Even the presence of health social networks makes traditional clinical trials more efficient through the availability of large searchable online databases of patients with health history and condition information. Pharmaceutical companies, industry analysts, policy architects and other interested parties can assess demand and market size directly from health social network websites.

PatientsLikeMe and Inspire are at least two health social networks offering access to clinical trials at present, selling anonymized data to pharmaceutical companies, universities and research labs. For example, in May 2008, Novartis recruited clinical trial participants from PatientsLikeMe estimating that they were able to speed up their 1,200-patient study of a new medicine for multiple sclerosis by a few months [9]. In another instance, PatientsLikeMe contacted 1,500 ALS patients for another research project and received 50 DNA samples (3.3%) [10]. The yield might not seem high but the time and cost savings in identifying, screening, contacting and obtaining responses from relevant patients is significant.

In addition to lower-cost patient recruitment, there are three other ways that health social networks are improving the quality of clinical trials. First, the depth of information generated through large online patient communities creatively interacting and monitoring their conditions with quantitative tracking tools can lead to new findings that give a better understanding of the underlying conditions. PatientsLikeMe in-house research staff is publishing some of these findings, such as the identification of non-motor symptoms of Parkinson’s disease in younger sufferers [11]. Second, health social networks provide a feedback loop to the clinical trials process. For example, PatientsLikeMe patients noticed and suggested corrections and improvements to the graphical display of data in ALS clinical trials [12]. Third, online health tracking in conjunction with clinical trials means that patients can make their experience feedback, including response to drugs, available as a public resource.

The obvious next phase of active patient participation in health social networks is patient-inspired research and patient-run research. This concept is also called open source health research and crowd-sourced health research. Self-run clinical trials and structured self-experimentation is emerging as patients may no longer have the inclination to wait for formal research findings and pharmaceutical company-sponsored clinical trials, and can possibly fill the medicine gap for orphan diseases and other conditions that do not make good business cases in the existing pharmaceutical model. Patients can review research literature and other remedy suggestions on their own and try them, tracking the results in a rigorous manner, sharing the information and running non-traditional clinical trials themselves. In one example, a PatientsLikeMe patient, newly diagnosed with rapidly progressive and young-onset ALS gathered 250 patients to self-experiment with lithium [13] per a research paper he had found [14]. The self-run patient study results were preliminary and found that the use of lithium did not slow disease progression. The example highlights many elements of the new power and role of patients, their ownership of the health care process and the attendant contentious legal, ethical, methodological and other issues.

Inevitably, fraud is likely to arise or may already exist in health social networks as there are significant economic incentives for drugs and other treatments to have high patient usage statistics and favorable reputations. The bona fide peer community may be one of the most helpful resources in detecting and policing fraud due to the deep knowledge of patients regarding their conditions and remedies, and their time spent on the websites.

2.1.4. List of health social networks

A list of current health social networks is presented in Table 1, organized into three categories: patient-focused general multi-condition websites, patient-focused cause-specific websites and physician-focused social networks. Most patient-focused health social networks offer the basic level of service, emotional support and information sharing, for a variety of medical conditions. About half also offer the second level of service, some sort of Q&A with physicians, and a few offer the third and fourth levels of service, quantitative self-tracking and clinical trials access.

A second class of patient-focused health social networks is cause-specific, offering primarily the basic emotional support and information sharing service. Physician-focused health social networks are also starting to have a presence, both for the usual industry-related networking but also as collaboration platforms, notably the Medical Image and Video Exchange ( http://www.medting.com) which in December 2008 had over 2,011 cases with 17,812 images and videos uploaded and available for collaboration, and OR-Live, which presents live interactive webcasts of surgical procedures to physicians, patients and the public.

2.2. Consumer Personalized Medicine

2.2.1. Consumer personalized medicine introduction

In the last several decades, advances in science have been enabling new paradigm understandings of biological life. Molecular biology was one such key shift, genomics is another that is occurring now, and proteomics, metabolomics and any or all of the other twenty “omics” fields ( http://omics.org) may further revolutionize the understanding and management of all biological processes. Current unsolved disease states such as cancer are complex and expressed differently in diverse groups of patients. Initially, it is easiest to tackle cases where the patients have certain characteristics or the disease is expressed in certain ways. Therefore therapies are targeted to sub-groups of patients, for example Imatinib for certain chronic myelogenous leukemia (CML) patients and Tamoxifen for certain breast cancer patients.

It is starting to be realized that obtaining and understanding a whole new level of detailed individual biological information could be necessary for advances in both institutional medicine and patient-driven medicine. The required information is starting to be known to the consumer and is increasingly available publicly, without the individual needing to wait for a condition to advance to the stage of symptoms or for a doctor to know that the information is available and relevant or notice that a particular condition could be assessed via testing. Consumers are taking it upon themselves to obtain a better understanding, resolution and possible prevention of disease conditions.

2.2.2. Consumer personalized medicine definition

The core definition of personalized medicine is using an individual’s specific biological characteristics to tailor therapies to that person, including drugs, drug dosage and other remedies. There are other more expansive descriptions, for example, as offered by the Personalized Medicine Coalition (http://www.personalizedmedicinecoalition.org/sciencepolicy/personalmed-101_overview.php). Part of the change in how health and health care are now being understood and realized is in using systemic personalized medicine approaches to individuals (Box 2). A systemic approach may incorporate a combination of an individual’s genetic, blood and other biomarker, environmental, lifestyle and other data. Consumer personalized medicine is the further step of individuals collecting and synthesizing their own data and using it to proactively manage their health.

The Quantified Self leaves much out. Subjectivity is a large part of health or disease. And there are many problems that cannot be quantified with a numerical value. Emotional well-being or the opposite can be a large factor in disease.  How does the QS detect depression, anxiety, or insomnia ?

Technology Is Minting A New Class Of Billionaires

How Health Care Technology Is Minting A New Class Of Billionaires

Perhaps we should add the Affordable Care Act is fueling the rise of software support for human resources and other essential functions for medical practice.

The introduction of the ACA along with suitable digital health aids has allowed SAAS companies to fluorish. One example is Zenefits.

Zenefits’ announcement that it raised $500 million at a $4.5 billion valuation marks another milestone for the health care information technology and services industry. Zenefits manages health insurance, payroll, and other benefits for small businesses. The valuation was stunning, and it makes Parker Conrad, who launched the start-up in 2013, a near-billionaire with a net worth of $900 million, based on an estimated stake of 20%, according to a source close to the company. 

For decades, health care information technology, now sporting the hipper moniker of digital health, was the poor relative of tech and biotech. The market valuation of 10 health IT companies in March 2010, when the Affordable Care Act was signed into law, was less than $20 billion. Today, their value is up nearly 90%. Cerner CERN -0.74%, a vendor of electronic health records, is worth alone $24 billion. 

The health care industry has long resisted newer technologies, the kind that made the financial and travel industries more efficient. It took the Affordable Care Act and the 2009 HITECH Act which calls for the computerization of patient records, to unlock opportunities for entrepreneurs, and unleash new wealth. All of these changes have attracted venture capitalists.

Of course this cost is added to the overall overhead of Health Care, paid for out of insurance premiums, patient pockets and/or insurance industry profits.  The burden has become serious to substantial, effecting bottom lines and diverting capital from true lifes sciences R & D.

Venture capitalists who have long ignored health IT because of poor prospects, have taken notice. They poured $6.5 billion into digital health start-ups last year—more than five times the amount in 2010, according to StartUp Health. After laboring for 10 years on miniaturized technology to test blood, Elizabeth Holmes came out of nowhere to become a billionaire when investors recently valued her company at $9 billion. 

Startup Health summarizes the ranking of Digital Health Fund startups.   Download here

The start-up in 2014 with the fastest growing valuation was not Uber, but Zenefits. 

House Passes G.O.P. Budget Aiming to Repeal Health Law

Somewhat earlier than expected, Republican lawmakers are setting in place an economic plan to replace the Affordable Care Act. 

Merely repealing the ACA is not an option. Careful budget planning and presenting a replacement plan is essential to not disrupting health insurance for millions of  Americans. 

Disassembly of a questionable affordable care act will be challenging. Measurements of it's success or failure extend beyond simple numbers of enrollees, or the remaining number of remaining uninsured.

The House on Thursday adopted a compromise Republican budget that aims to repeal the Affordable Care Act

The 226-to-197 vote sends the nonbinding budget plan to the Senate for a vote next week. The joint House-Senate blueprint promises to balance the budget in nine years through more than $5 trillion in spending cuts, though Republicans have made clear that they are not interested in actually imposing large cuts to programs like Medicare, food stamps, Pell Grants or Medicaid with follow-up legislation.

Under congressional procedures, lawmakers first adopt a budget that is essentially a visionary document, and follow it up with binding legislation to set agency budgets, cut or raise taxes, and make changes to so-called mandatory programs like Medicare and food stamps, whose budgets run as if on autopilot.

The GOP budget plan for health insurance is part and parcel of a greater plan to secure Medicare, But Democrats say the Republican plan unfairly targets the middle class and the poor while leaving in place lucrative tax breaks for corporations and the wealthy.

The White House budget director, Shaun Donovan, dissected the measure in a blog post, pointing out $600 billion in cuts from “income security” programs like nutrition assistance, cash assistance to low-income older people and to people with disabilities, and refundable tax credits for the working poor.

Republicans are focused mostly on delivering legislation to President Obama that would repeal the bulk of his signature health care law. Successful action on the budget plan would permit a health care repeal to advance through the Senate without the threat of a Democratic filibuster. Mr. Obama is sure to veto the measure, which is scheduled to advance by late July.

This proposed legislaton occur almost simultaneously with Dr. Ben Carson announcing his bid for the Presidency in 2016. A key point of his platform is to repeal the Affordable Care Act, often called "Obamacare".