Lab Soft News

Mobile Health Teams as a Variant on the Theme of Decentralized Acute Care in the Home

I have come to the conclusion that we need to rethink the mission of hospitals and have blogged about the impetus toward decentralization that is causing various types of healthcare to be delivered closer to patients' homes (see: Merged CVS and Aetna Will Move Toward a Community-Based Healthcare Model; The Changing Role of Clinical Pathologists; Analogy with Hospital Pharmacists; TEN MAJOR TRENDS FACING THE HEALTHCARE INDUSTRY IN THE AMBULATORY SPACE ON A FIVE-YEAR HORIZON). Part of this trend is exemplified by the emergence of the so-called bedless hospital (see: The Future of Healthcare: Virtual Physician Visits & Bedless Hospitals; The Design of Bedless Hospitals Continue to Evolve Based on Cost and Technology; Some Additional Ideas About the Bedless Hospitals of the Future). Part of this trend also involves the increasing popularity of virtual care (i.e., telemedicine) (see: Telemedicine and Home Monitoring Will Promote Healthcare Transformation; Surgeons Extol the Advantage of Telemedicine in Rural British Columbia; The Need for More Research in Provider-to-Provider Telemedicine). New ideas about pushing care out of hospitals and into the community continue to blossom. A recent article raised the issue of community paramedicine (see: Do Hospitals Still Make Sense? The Case for Decentralization of Health Care). Below is an explanation of this model of decentralized care:

Decentralization is also being achieved through the use of well-trained health care providers on wheels: paramedics and emergency medical technicians in ambulances. This ready-made army of mobile health clinics has been used to create a new category of care delivery known as community paramedicine. The Geisinger Health System in Pennsylvania calls its community paramedicine program the “Mobile Health Team” and recently completed a pilot program in which community paramedicine was used for patients with congestive heart failure (CHF). In this model, the team is activated when a patient with CHF is discharged from the ED. Community paramedics visit the patient at home, perform a detailed assessment, reassess the patient’s weight and condition, and, with remote physician direction, administer intravenous diuretics and other patient-centered care. Over a 1-year period, this pilot program prevented 42 potential admissions and 168 inpatient days among 704 patients, reduced ED visits for CHF by 50%, and reduced overall readmissions by 15%.

It's no accident that Geisinger's Mobile Health Team is focusing, in part, on supporting congestive heart failure patients in their homes. There are penalties incurred by hospitals for the readmission of patients recently discharged from the hospital and this is a common scenario for those with CHF (see: Telemedicine Used in New Healthcare Settings Like Coaching; Home Monitoring of Discharged Patients by Hospitals for Cost Savings). Organizing mobile health teams makes perfect sense because the idea takes advantage of well-trained teams of healthcare professionals who are already operating in the field, primarily to transfer patients from their homes to the hospital and for emergency calls. The mission of these "paramedicine teams" is then broadened to assess patients and administer drugs intravenously to them in their homes under physician direction and thus reduce readmission rates as detailed in the excerpt above.

Your Health Records Don't Belong to You; It's Time for a Change in the State Laws

I am more convinced than ever that it's time to ensure that medical records should legally "belong" to the patients for whom they are created. A recent article addressed this theme in a very detailed way (see: Your Health Records Don't Belong To You. It's Time You Demand Them!). Below is an excerpt from it:

Despite years of rhetoric, patients have never really been at the center of the health care universe ― at least not since the introduction of electronic health records (EHR). And this has become increasingly obvious in the fight for access and control of patient medical data. A recent conversation between former Vice President Joe Biden and Epic CEO Judy Faulkner highlights the problem well [see: Do Patients Really Need Access to Their Access to Their Health Records?; Is Judy Faulkner's Interaction with Joe Biden Only an Example of Medical Paternalism?]....In fact, patients do not have legal ownership over their medical records in 49 states ― New Hampshire being the one exception. The Obama administration gave billions in incentives to doctors and hospitals to buy EHR systems, in hopes of getting companies like Epic to increase the ability to share and exchange patient records. Unfortunately, the result has made EHR vendors rich, but patients have seen little improvement in interoperability or access. Here are five things to keep in mind about your medical records, and your rights to better health:

* Patients Lack Access, But No One Else Seems To: Marketing firms, pharmaceutical companies and hackers are more likely to see medical records than patients are. And while selling medical data has become a billion-dollar industry, patients don’t see a dime of that profit.....

* You Deserve What Is Rightfully Yours: Although only one U.S. state has deemed a patient the owner of their own EHR, this can easily change at the state level. 20 states give ownership to the hospital/provider, while 29 states leave the issue completely undefined.....

* Improved Access Improves Health Outcomes: Increased access to medical records has proven positive results for patient’s health. For example, rapid access to office visit notes has led to 75% improvement in ability to recall care plans, better self-care, a clearer understanding of conditions, and patients who feel more in control of their health care.....

* Communication Is Key. Therefore We Must Share: Improvements in health are found not only by increasing patient access to medical records, but also by making it easier to exchange those medical records between systems and providers.....

* Technology Will Lead; Culture And Legal Will Follow:  The current state of health care is not patient-centric. Patients are not viewed as collaborators, and have little say in their own health care.....

There is only one explanation for the fact that patients don't control their medical records in 49 states. The lobbying power of the healthcare industry including doctors, hospitals, pharmaceutical companies, and health insurance companies far exceeds that of patients in the larger scheme of things. In fact, I suspect that many patients, if queried, would be bewildered by this issue and not even have an opinion on the matter. This reflects the long history of healthcare providers taking a position that they make most of the decisions regarding one's health status. The strongest point I would make on the need for individual ownership of medical records is the same as the third point above. This is to say that patients need to escape the passivity that describes many healthcare encounters today and take ownership of their care in order to promote more positive outcomes. Patients need to be better educated on this matter.

What Is Digital Therapeutics; Examples of an App That Is Gaining Attention

I had never heard the term digital therapeutics until I encountered a recent article that used the term (see: Digital Therapeutics: The Future of Health Care Will Be App-Based). Below is an excerpt from it:

Last month, healthcare startup Omada Health secured a $50 million C round led by major insurer Cigna, which brings the 5-year-old company’s total funding to over $127 million. That kind of nine-figure investment isn’t unusual for a company with the next blockbuster drug or game changing medical device, but Omada’s core product is a diabetes-preventing mobile app! Omada is a leader in one of the hottest new sectors of the app economy: Digital Therapeutics. Digital therapeutics are a new category of apps that help treat diseases by modifying patient behavior and providing remote monitoring to improve long-term health outcomes....

There are already hundreds of apps that help us manage our workouts or meditate more effectively! The key difference is that digital therapeutics implement treatment programs tailored to specific ailments, especially major chronic diseases like diabetes, heart disease, high blood pressure, and pulmonary diseases like COPD. Because patient behavior is so crucial in preventing and limiting the severity of these life-threatening illnesses, the early evidence is that these digital health programs, often combined with human coaching/interaction, can make a significant difference in health outcomes.

To provide hard data of their efficacy (and differentiate themselves from wellness apps), newcomers like Omada have taken a page from the pharma industry and have performed clinical trials with major healthcare networks like Humana. In recently published research, prediabetic patients that participated in a year-long Omada-based program lost 7.5% of their initial body weight and showed improved glucose control and decreased cholesterol. These results are one reason why health insurance firms are among the big investors in the leading startups. 

If you watch the "how it works" video on the Omada web site about the weight reduction program, the reasons for its apparent success become clearer. There is certainly an app and a digital scale involved in the company's weight reduction program but, in addition, the patient is linked to a health coach and to a other participants in the program. I have blogged extensively about the value of health coaches (see: The Future of Healthcare: Virtual Physician Visits & Bedless Hospitals; AstraZeneca Pays for Personal Health Coaches, Develops Other Health Apps; A New Perspective on Telemedicine: Patient Visits with Multiple Providers). Weight loss community apps are also a proven concept (see: Twinbody Weight Loss Community). There may be a bright future for digital therapeutics, but what I see right now for Omada is an app-powered rehash of tried and true approaches to weight loss.

Home Genetic Testing May Cause Surprises; Better Pay Attention

In a recent blog note, I discussed the possibility of being "surprised" when a genetic test revealed that one had a predisposition to develop early Alzheimer's disease (see: Genetic Testing Could Lead to a Discovery of Genes Predisposing to Alzheimer's). In this same vein, here's a link to an article that discusses in detail some of the "surprises" that may come about about one's parentage is revealed as a result of consumer-oriented DNA home testing (see: As home DNA tests become more common, people must grapple with surprises about their parents). Below is an excerpt from it:

More people than ever before are expected to buy a DNA-test this Christmas from sites like AncestryDNA or 23andMe....Millions have already gotten tested. And for many of these people, the results are unexpected, shocking, and occasionally even life-changing. The direct-to-consumer genetic testing market, which includes both health and genealogy tests, is expected to grow from about $70 million in 2015 to $340 million by 2022....CNBC spoke to a dozen people who took a DNA test to find out fun facts about their ethnic roots, then were surprised to learned they were donor-conceived. That means the men who had raised them were not their biological fathers -- instead, their parents had faced fertility problems, and their mothers had used sperm from donors at a fertility clinic. Research from 2005 found that so-called paternity discrepancy, when a person is identified as being biologically fathered by someone other than the person they believe is the father, occurs between 0.8% to 30% in the population...Some bio-ethicists say that 23andMe, Ancestry and the rest should do more to educate their users about the risks and potential outcomes. Making matters more complex is that a donor who wants to stay anonymous might decline to send in their DNA, but can still be traced through their family members. To its credit, 23andMe does warn its users in its terms of service that the information "has the potential to alter your life and worldview."

I know of one person who recently learned that his father had been a sperm donor when younger and before his marriage. He has now learned the identities of agnate siblings by submitting a cell sample to a DNA testing service. He is not dismayed by learning about his new relatives and looking forward to meeting them. I personally have been contacted by an individual identified by 23andMe as a second or third cousin of mine. She informed me that she was adopted but knows nothing about her biologic parents. On the basis of the limited information that she was able to provide me, I was unable to help her discover more details about her biologic parentage. Regarding 23andMe, one needs to give explicit permission to share test results broadly so merely being tested is not tantamount to providing broad access about your genetic data to others. Here's another quote from the article referenced above:

Some bio-ethicists say that 23andMe, Ancestry and the rest should do more to educate their users about the risks and potential outcomes. Making matters more complex is that a donor who wants to stay anonymous might decline to send in their DNA, but can still be traced through their family members.

Here's the tricky part. One or more siblings may submit specimens to the company and sensitive information may thus be revealed that other siblings might prefer not to be made public. At this point, we are not going to get this genie back in the bottle.

Analytics May Be the Secret Sauce to Propel CVS-Aetna Forward

In a recent post, I discussed the CVS purchase of Aetna and speculated on the benefits that might accrue to the merged company (see: Merged CVS and Aetna Will Move Toward a Community-Based Healthcare Model). In an initial press release, CVS executives announced that the diagnosis and treatment of chronic diseases would become a special focus. Below is an excerpt from this statement by the company:

Because the storefront pharmacies and MinuteClinics are embedded in local communities and have become places that Americans frequent,...the combined company will be better able to manage patients with chronic diseases, who may see their primary care doctor only three or four times a year. Patients with chronic diseases represent the lion's share of healthcare spending. According to the Centers for Disease Control and Prevention, 86% of the nation's $2.7 trillion annual healthcare costs go to patients with chronic and mental health conditions.

I can easily understand why this large, vertically integrated healthcare company would want to focus on patients with chronic diseases. They account for a very large percentage of healthcare expenditures in the country. However, I did wonder why the company assumed that it could deliver better and less expensive services to these patients than current health systems and physician practices. I discovered a possible answer to this question in another article commenting on the purchase (see: CVS Health and Aetna bet $69 billion merger on analytics, data, digital transformation). Below is an excerpt from it:

One of the core benefits pitched by CVS CEO Larry Merlo [for the Aetna acquisition] was better use of data and analytics. Aetna has had a solid analytics architecture for years and has focused on reducing fraud. CVS is using its Minute Clinics and pharmacy benefits data and combining it with its retail touch points. By offering more services and personalization, CVS and Aetna are hoping they can better manage chronic conditions, coordinate care and reduce hospital readmissions.

CVS/Aetna seems to be assuming that it can deliver better care at a lower price to patients with chronic diseases, in part, because of its expertise in analytics and big data acquired through its PBM and health insurance units. The core idea here appears to be that the company could proactively, through data analysis, treat chronic diseases at an earlier stage and avoid downstream, more expensive care. By mixing a health insurance business with a healthcare delivery business, there should thus be an incentive to treat diseases earlier.

It would not be hard to outperform most of our current health systems in terms of utilizing population health data (i.e., health analytics). Despite much discussion of the potential of population health by health systems (see: Population Health Management; Software Designed to Support ACOs; Population Health, the "New" Hot Button in Healthcare Software; Cerner Emphasizes Population Health but Pay Attention to the Details), I believe that little practical knowledge has been gained in terms of improving healthcare delivery. It will definitely be worthwhile to keep an eye on the performance of CVS-Aetna going forward.

ELLKAY Acquires CareEvolve and Thus a Larger Footprint in Lab Computing

I was a little behind on this news but I only recently learned that ELLKAY acquired CareEvolve in February of this year from OPKO Health. CareEvolve was previously a unit of BioReference Laboratories which had been purchased by OPKO (see: ELLKAY Completes Acquisition of CareEvolve Laboratory Portal and Connectivity Platform). Apparently OPKO did not find CareEvolve's software business a good fit for them. Here's an excerpt from this article about CareEvolve's business model:

The CareEvolve portal and interfaces power routine clinical, anatomic pathology, genomics, toxicology, and other types of laboratories, providing the electronic clinical workflow support between the point of care and laboratory. CareEvolve provides its laboratory customers with a broad range of features supporting the needs of physician offices, hospital clients, long-term-care facilities, prisons, and patient-service-center workflows.

CareEvolve provides services similar to those of Atlas Medical. One major business line for CareEvolve is thus the support of hospital lab outsourcing to physician offices. The company is certainly a good fit for ELLKAY. Copied from its web page describing the services it provides to clinical labs (see: Diagnostics Laboratories), it summarizes its mission in the following way:

We understand how the increase in EMRs and electronic orders and results is reshaping the healthcare industry. Our comprehensive suite of products and services offer all the solutions laboratories need, including providing software to practices for electronic orders and results, connecting to practice EMRs for electronic results delivery, and cross-reference insurance mapping, as well as connectivity to patient demographic and insurance information.

ELLKAY has a far broader mission than labs, however. Here is a brief summary of its services for hospital and health systems:

As these hospitals and healthcare institutions grow, they inherit new priorities and challenges. One of the major challenges is decommissioning the old EMR and keeping legacy data accessible when moving to a new EMR/EHR....Additionally, healthcare organizations are now finding it a necessity to aggregate various patient data from disparate source systems.....[I]t is a challenge for healthcare organizations to connect to the hundreds of disparate systems in the thousands of individual practices for the patient data they need. 

New Ownership Model for Derm Practices; ClearPath Manages Digital Images

At the end of last week, I helped manage the Digital Pathology Workshop that was sponsored by the Association for Pathology Informatics (API). One of our faculty members was Michael Kent, Ph.D., who works for a dermatology reference pathology lab in Dayton, Ohio -- Dermatology Lab of the Central States (DLCS). DLCS is part of a large dermatology entity called Dermatology of Central States (DOCS) which was recently acquired by a Chicago private equity firm, Sheridan Capital Partners (see: Sheridan Capital Partners Invests in Dermatologists of Central States). I was previously unaware that dermatology practices were being purchased by venture capital and private equity firms. This trend was discussed in a recent article (see: Is venture capital the future of dermatology?) with an excerpt from it below:

With rising overhead and time-consuming reporting requirements, economies of scale have become necessary, encouraging physicians to organize into larger group structures. Many of these larger group structures are hospital based, however dermatology has always treated outside-of-the-body disease and remained outside of the hospital....This has necessitated the formation of hospital independent groups, many of which are rather creative business structures. One emerging model is the purchase of private dermatology offices by venture capital-funded groups who combine practices under one organization; therefore, centralizing billing, managerial staff, purchasing, web-based appointments, electronic medical records, advertising, etc. This allows the realization of economies of scale and the individual dermatologist to receive some monetary value for a practice that might be otherwise impossible to sell as private practice diminishes....My concern is that venture capital-owned large dermatology groups are commoditizing our specialty and taking control of the future of dermatology out of the hands of the dermatologist.

Of special interest to me is that Dr. Kent has developed an app called Clearpath that manages digital images of skin specimens including reporting capabilities. The program is intended both for dermatologists who sign out their own cases (estimated by Dr. Kent at about 20% of dermatologists) and those who want to review the images of their cases. Here is a summary of the goals of the Clearpath software (see: Clearpath 3.0):

Clearpath 3.0 is the first-of-its-kind software solution that brings the benefits of digital pathology directly to the dermatology community—whether you already review your own slides or would like to expand your practice’s slide reviewing capability. Designed by an expert team of dermatopathologists and practicing dermatologists, this intuitive software is custom-built for ease of use, flexibility and integration into your existing EHR.

I was live-tweeting at the Digital Pathology Workshop mentioned above and posted a tweet that referred to Michael Kent and his Clearpath product. In about three days, the tweet has scored nearly 3,700 impressions which is roughly ten times more than any other tweet I have posted. This show of interest suggests a very large following for dermatopatholgy, ClearPath, and digital imagining in derm. Duly noted.

Making Surgical Pathology and Radiology Reports More Patient-Friendly

To restate the obvious, surgical pathology reports have a new audience -- patients. Some of them are accessing their reports via patient portals (see, for example: Patients Often Lukewarm about Patient Portals; Problems with Training?; Could Apple Be Trying to Develop a "Patient Portal" for the iPhone?). Traditionally, pathologists have dictated these reports with the understanding that they were communicating primarily with the physicians who submitted the tissue for diagnosis. An important question these days is whether the language of these reports needs to be altered in any way now that patients are reading them. A recent article discussed a radiologist-developed "platform" that tweaks radiology reports so that they can be better understood by patients (see: New platform creates patient-friendly radiology reports). Below is an excerpt from it:

Patients may soon have a much easier time understanding the details of their own radiology reports, thanks to a platform presented by Seong Oh, MD....The platform, called Patient-Oriented ReporTER (PORTER), was designed as a response to the increasing prevalence of online patient portals and various online medical resources. Patients are being asked to access their own information from home, Oh and his colleagues recognized, but radiology reports are still being written as if they’ll only ever be read by someone with a medical background....PORTER takes the radiologist’s findings and helps translate it so that patients with no medical knowledge can fully understanding the information. Key words are underlined, and users can hover their cursor over those words to make the definition pop up. Click “axial,” for instance, and PORTER will say, “An anatomical plane that divides the body into head and feet portions.” Visual aids are also provided, including charts, graphics and a photograph of the radiologist completing the report....One of the biggest advantages to patients understanding their own radiology reports, Oh said, is that it empowers patients to ask the right questions when they meet with their referring physicians.....Oh said PORTER is still in the early stages, but a prototype has been fully developed to be used with knee MRI reports at Penn Medicine. In the near future, patients will be asked to use PORTER at home to review their own reports and then complete a detailed survey about their experience.

In a blog note posted almost two years ago, I presented some criteria that pathologists and radiologists could follow to make their reports clearer to other healthcare professionals (see: Avoiding Qualifiers, Exceptions, and Hedges in Radiology and Pathology Reports). I list them below:

• Speak to the referring clinician whenever there is ambiguity or extreme complexity of a case.
• In reports, avoid a vague rambling discourse as well as qualifiers, conditions, and exceptions.
• Whenever possible, arrive at a reasonable and actionable conclusion in the report to guide the clinician.

The major thrust of this current note is different from my previous note. The question is now being asked whether pathologists should seek to achieve greater clarity with their reports and also perhaps take steps to make them more understandable by patients. I have a feeling that the "PORTER platform" described in the excerpt above may be unacceptable for many radiologists because of the possibility that the software might malfunction and introduce mistakes or misunderstandings into a report when viewed by patients. So what action should be taken to make surgical pathology reports better understood by patients? Given that the primary audience for such reports will continue to be the physicians ordering them, I am not sure that an app like PORTER would be suitable. However, it might be appropriate on patient portals to post a glossary of medical terms used by pathologists and radiologists in their reports that could be used by patients to better understand their reports. 

Merged CVS and Aetna Will Move Toward a Community-Based Healthcare Model

Following the purchase of Aetna, the third largest U.S. health insurance company, CVS has lost no time in describing the healthcare goal for this large new entity: a community based care model (see: CVS and Aetna seek community-based care model in giant healthcare deal). I have previously blogged about this same topic (see: Possible Purchase of Aetna by CVS; Strategic Healthcare Implications). Below is an excerpt from this current article:

Through their $69 billion deal, CVS Health and Aetna are swinging an axe at the traditional ways in which patients access healthcare in hopes of building a new kind of model that's lower cost and more convenient for the consumer. At the center of this strategy is what's commonly called the new front door to healthcare [see: Designing health care's new front door]: the walk-in clinic, and CVS has nearly 10,000 of them....The companies agreed that CVS will take over Aetna, with the No. 3 U.S. health insurer becoming a standalone unit inside the pharmacy giant....Because the storefront pharmacies and Minute Clinics are embedded in local communities and have become places that Americans frequent,...the combined company will be better able to manage patients with chronic diseases, who may see their primary care doctor only three or four times a year. Patients with chronic diseases represent the lion's share of healthcare spending. According to the Centers for Disease Control and Prevention, 86% of the nation's $2.7 trillion annual healthcare costs go to patients with chronic and mental health conditions....Already, insurers and self-insured employers have been steering patients toward lower cost care settings. Even hospitals have been opening retail clinics to capture patients and pull them into their systems. The cost of care at a retail clinic is much lower than in a doctor's office, and evidence has shown that the care quality is equal.

In abbreviated form, here are a series of bulleted points about how I think this community model of care will evolve:

• Executed through CVS's MinuteClinics, services will be offered for minor ailments as before but now with chronic disease care grafted on the mission. Offering care in a neighborhood setting rather than more centrally reinforces what I have called in the past the centrifugal direction of healthcare (see: Could Apple Be Trying to Develop a "Patient Portal" for the iPhone?).
• Although CVS may augment their MinuteClinic workforce with physicians, it's also possible that they may offer telemedicine visits. This would allow them to perhaps partner with hospital system(s) and provide specialty care. I think that a number of hospitals would compete to provide such telemedicine partnerships in order to obtain the CVS acute care and surgery referrals.
• I predict that at least three types of lab testing will be soon be offered: (1) low complexity tests that are currently offered  on-site (see: Details about CVS' MinuteClinic POCT Strategy; Lab Testing Now Being Offered in Walgreens California Stores); (2) a broad array of tests provided by national reference labs with the CVS stores serving as patient service centers (PSCs) (see: Walgreens Partners with LabCorp for Patient Service Centers in Drug Stores); (3) it would also be feasible for CVS to launch point-of-care testing (POCT) services to generate rapid test results in the MinuteClinics.
• An interesting question is how the new entity will provide medical imaging. If they do anything at all, it will probably be to develop relationships with standalone imaging centers which are already low-cost providers (see: Anthem Won't Pay for Outpatient MRIs and CT Scans in Hospitals).

In August, 2006, I discussed the  minor efforts of health systems to compete with retail drug walk-in clinics (see: Health Systems Launch Walk-In Clinics). This then prompts the question about how our large U.S. healthcare systems will react to this merger news. This answer for me is easy -- they will do little or nothing (see: The CVS-Aetna Merger Is A Mortal Threat To U.S. Hospitals). Most will just wring their hands, having thus far been unable to develop a low-cost ambulatory solution to compete with the walk-in clinics.

Genetic Testing Could Lead to a Discovery of Genes Predisposing to Alzheimer's

I have previously blogged about some of the complexities of genetic testing for carriers of ApoE4 who are at risk for developing Alzheimer's disease (see: New Gene Testing a Threat to Insurance Companies; How They Might Respond). A recent article in the New York Times addressed this same issue (see: What if You Knew Alzheimer’s Was Coming for You?). Below is an excerpt from it. The article is quite long so follow the link to read the whole thing if you are interested.

Six years ago, at age 49, Julie Gregory paid an online service to sequence her genes, hoping to turn up clues about her poor circulation, blood-sugar swings and general ill health. Instead she learned she had a time bomb hidden in her DNA: two copies of a gene variant, ApoE4, that is strongly linked to Alzheimer’s. Most Americans with this genotype go on to develop late-onset dementia.....In the difficult months after her genetic test, Ms. Gregory “wanted to be with people who were going through the same devastation,” so she sought out other ApoE4 carriers. In 2013, she and a few others started a nonprofit group and created a website (ApoE4.info) where the community could gather. Today the group has more than 2,000 members. They pore over medical journals, reach out to top researchers in the field and share notes about their experiments with diet, exercise and other lifestyle modifications. Many of the members maintain their anonymity for fear of being “outed” as carriers of the gene variant....Jason Karlawish, a professor of medicine and neurology at the University of Pennsylvania, studies how people at high risk of Alzheimer’s disease cope with that knowledge....Many health organizations discourage patients from learning their ApoE genotype. They warn that people may not be able to cope with bad news or will misinterpret the results. But according to Theresa, a member of the ApoE4 community...., it is paternalistic to decide how someone else should feel about the test. “My attitude is that you have to know the facts, analyze them and deal with them,” she said. “The sooner you know your gene status, the sooner you can start doing something about it.”

Here is more information about ApoE4 from the NIH web site (see: Alzheimer's Disease Genetics Fact Sheet):

Researchers have not found a specific gene that directly causes the late-onset form of the disease. However, one genetic risk factor—having one form of the apolipoprotein E (APOE) gene on chromosome 19—does increase a person's risk. APOE comes in several different forms, or alleles:

* APOE ε2 is relatively rare and may provide some protection against the disease. If Alzheimer's disease occurs in a person with this allele, it usually develops later in life than it would in someone with the APOE ε4 gene.

* APOE ε3, the most common allele, is believed to play a neutral role in the disease—neither decreasing nor increasing risk.

* APOE ε4 increases risk for Alzheimer's disease and is also associated with an earlier age of disease onset. A person has zero, one, or two APOE ε4 alleles. Having more APOE ε4 alleles increases the risk of developing Alzheimer's.

Bioethicists have long been discussing the risks involved in sharing genetic information with individuals, particularly data with serious implications for future health. Currently, a number of web sites such as 23andMe and AnecestryDNA will analyze portions of your genome but with a genealogical or genetic trait orientation rather than one related to diagnosing diseases. However, the former company is now authorized to sell some tests for genetic risks to consumers (see: F.D.A. Will Allow 23andMe to Sell Genetic Tests for Disease Risk to Consumers). Genetic studies oriented toward disease predisposition are also increasingly available in hospital settings that potentially could lead to the inadvertent discovery of, say, the presence of ApoE4. Some individuals would prefer to gain knowledge about such genetic information whereas others would be stressed by it. Everyone therefore needs to be cautious when ordering genetic testing when there is the possibility of unveiling unfavorable information.