Lab Soft News

The Future of the Personal Health Record (PHR)

I have posted a number of previous notes about personal health records (PHRs). John Moore over at the Chilmark Research blog recently posted on the web one of his lectures about PHRs: Evolving PHR Market: Analysis and Trends. John has been providing some of the most perceptive comments I have seen on the evolution of the PHR. Below is a short list of some of his ideas contained in this specific lecture that caught my attention:

• The PHR market has moved to a B2B model with an employer-provided PHR (35%), provider provided (25%), and health plan-provided (15%).(Slide #5)
• First generation PHRs: isolated. The target was the end consumer and most third party PHRs remain stuck here.(Slide #8)
• Second generation PHRs: Online with some data. One of the major goals was to promote healthy behavior.(Slide #9)
• Third generation PHRs: Highly networked utility. Richer data and a richer experience.(Slide #10)

John is right on target with his remarks. Much of the PHR news recently has been about Google or Microsoft cutting some deal with a large health system or major health insurance company regarding their PHRs. This is a reflection of the increasing importance of the B2B model to which John refers above. John's idea about the third generation PHR as a highly networked utility is pitch-perfect. PHRs will only provide very high value for consumers when they are populated with important medical information. Hospitals, physician clinics, health plans, and health insurance companies control most such information. Therefore, the networked utilities that John describes will serve to connect consumers to providers to payors.

A number of conclusions can be drawn about the networked medical record architecture that John suggests. First of all, the goal of practical untethered PHRs (i.e., the non-networked PHR) that I have supported (see: Implications of the Kaiser-Microsoft PHR Deal) was probably a pipe dream. Secondly, the notion of consumer-space versus provider-space on these networked healthcare utilities is going to get a little fuzzy. I think that this blending and ambiguity will be helpful in the long run. For example, a health care consumer's observations about his or her own health status can be an important component of a health record whereas they are generally not considered to have great value. In addition and starting now, we need to set up standards such that the origin and authors of all data contained in a networked health record can be clearly delineated.

Russians Commemorate the Enema with a Public Statue

Sometimes we fail to celebrate in a conspicuous way the more mundane but helpful elements of our lives. The good people of Zheleznovodsk, Russia, are doing their small part to help correct this problem (see: Regular Russian City Immortalizes Enema With $42,000 Statue Held Aloft By Angels). Below is an excerpt from this article with a photo (boldface emphasis mine):

For the Russians, [the enema] is something more, because one city there erected an 800-pound, $42,000 statue to honor the device for its many years of unsung service to the backside of mankind. "There is no kitsch or obscenity, it is a successful work of art," said Alexander Kharchenko, a resident of the regularity-loving Zheleznovodsk. "An enema is almost a symbol of our region." ...When you dig a little deeper into this story, you start to see that Zheleznovodsk is in fact the perfect location for this statue. Nestled deep within the Caucasus Mountains region, the city is best known for its spas, and their mineral water-infused enemas drawn from mountain springs. A banner declaring, "Let's beat constipation and sloppiness with enemas" was posted on one of the spa's walls to commemorate the statue.

Commenting at greater length on this story would certainly not improve it and might get me into serious trouble, so I will restrain myself. However, here's a link to a PubMed article in Russian entitled: Errors in directing children to Zheleznovodsk spa. Zheleznovodsk does not sound like a town for the young or faint-hearted. Although, come to think about it, I don't know what the name of the town sounds like at all.

Some New Insights into "Bypass Brain"

The cognitive and behavioral aspects of bypass brain are now in the news as a result of the presidential political campaign and Bill Clinton's behavior. Read more about this in a recent blog note (see: 'Bypass Brain': How Surgery May Affect Mental Acuity). Below is an excerpt from the story with boldface emphasis mine:

Aides to Bill Clinton last week vehemently denied speculation that the former president's intemperate remarks on the campaign trail were due to mild cognitive damage from his quadruple-bypass surgery in 2004....But the condition dubbed "pump head" or "bypass brain" has long been recognized by doctors, even if they seldom warn patients about it....Symptoms include short-term memory loss, slowed responses, trouble concentrating and emotional instability....[R]esearchers at Duke University Medical Center tested 261 patients before and after bypass surgery and found that 53% of them had significant cognitive decline when they were discharged -- and 42% still suffered from it five years later....One explanation is that when a patient's blood is pumped through a heart-lung machine during bypass, tiny air bubbles, fat globules and other particles may enter the bloodstream. The pump can also damage platelets, which form clumps, and clamping the aorta loosens bits of plaque. That debris can travel to the brain and clog tiny capillaries, forming microscopic strokes....There's little dispute that heart surgery does cause short-term cognitive problems -- anesthesia alone can do that, particularly in older patients. But recent studies suggest that the cognitive decline years later may be due more to the underlying artery disease than to the effects of surgery.

I don't think that it's fair that the cardiac surgeons need to bear the brunt of Clinton's off-the-cuff remarks on the campaign trail. I also understand that more research is needed to further delineate the true nature of bypass brain. Nevertheless, I suspect that all of us have grown far too complacent about the inherent risks of any surgical procedure and general anesthesia. Here's some food for thought from the U.K. (see: 'Care flawed' in many bypass ops):

Coronary artery bypass graft operations, the focus of their latest project, has approximately a 2% death rate, and over the three year period checked, there were 1,198 deaths reported....There were problems found in every step of the process, from delays after referral, to the way tests were carried out, doctors communicated with each other, and the way patients were cared for after their operations. Overall, they concluded that in two-thirds of cases which ended in the death of a patient, some aspect of care was flawed, due to poor organisation, communication or teamwork.

If the time comes, I guess that I will opt to have a cardiologist snake a catheter into my heart, steer the tip into the ostium of one of my coronary arteries, and drop off a small spring-like device to keep the vessel open. This seems to be the safest course of action.

BariatricEdge: A Web Site Focusing on Bariatric Surgery

I have published a number of blog notes about bariatric surgery (one example: "Curing" Diabetes with Bariatric Surgery). I have also commented at length in the past about the value of the web for healthcare consumer education, frequently in notes related to Health 2.0 (example: Introduction to Health 2.0). I encountered a web site recently called BariatricEdge that is designed for consumers who are considering bariatric surgery. The sponsor of this site is Ethicon Endo-Surgery. Here is a brief summary about the company taken from the home page of its web site:

Ethicon Endo-Surgery...develops and markets advanced medical devices for minimally invasive and open surgical procedures. The company focuses on procedure-enabling devices for the interventional diagnosis and treatment of conditions in general and bariatric surgery, as well as gastrointestinal health, gynecology and surgical oncology.

I found the BariatricEdge web site to be interesting on a number of different counts. First of all, the home page is captioned Real Patient's Stories and features video testimonials by patients who have undergone bariatric surgery. Needless to say, all of them are enthusiastic about the surgical procedure. The search options on the web site are also interesting. There is an As Told By search field with only two choices, Patients and Professionals, and a Topics search field with 11 choices including Diet, Fear of Surgery, Complications, Moment of Truth, and Paying for Surgery. Along the left-hand margin of the home page are a list of general category that you can click-through, including About Morbid Obesity, Qualifying for Bariatric Surgery, Health Benefits, and Risk of Surgery.

In general, I was impressed by this web site and the quality of the information available on it, considering the fact that the sponsor of the site is most interested in selling endoscopic instruments. One aspect of the web site that interested me was that the search options for the web site were predetermined. I suspect that such a feature would be welcomed by a consumer trying to understand bariatric surgery and unsure about where to start. Obviously, the web site also paints a relatively rosy picture of bariatric surgery. However, the more sophisticated consumer browsing the web can get a more complete picture by merely searching the web for complication + bariatric surgery (example: Bariatric Surgery Risks).

Moving Resources from the Therapeutic to the Diagnostic Silo

I moderated a panel discussion at the recently completed Pathology Futurescape conference sponsored by the CAP Foundation. The panel members spoke to the topic of Corporate Innovation as an Engine for Change and included the following corporate representatives: Gene Cartwright (GE), David Okrongly (Siemens), Dirk Soenksen (Aperio), and Mark Newburger (Apollo PACS). During the course of the discussion about the future of integrated diagnostics, Gene Cartwright suggested that we need to move resources from the therapeutic to the diagnostic silo in order to achieve the promise of pre-symptomatic/pre-clinical diagnoses for patients. This basic idea is incorporated in the concept of the early health model being championed by both GE and Siemens and about which I have posted a number of previous notes. There was insufficient time during the panel discussion to discuss any of the practical details about how to achieve such a reallocation of resources and about which I would now like to speculate.

I have come to the conclusion that the key to increasing available resources for diagnostics in the U.S. healthcare delivery system is embedded in the concept of therapeutic efficacy. By this I mean that we need to begin to organize a broad diagnostic effort to determine whether the various drugs being prescribed and administered to patients, particularly expensive chemotherapeutic agents, are achieving their intended results. Put another way, is the chemotherapy being administered to patients inhibiting the course of the disease or curing the patient? Therapeutic efficacy can be measured by means of biomarker monitoring and  medical imaging.

The necessary first step in this process will be to determine criteria for measuring therapeutic efficacy by drug by disease and recommending the diagnostic tests and procedures used to measure efficacy. After these criteria have been developed, the program can proceed. A number of possible drug treatments will never be initiated because of negative results obtained from companion diagnostics. Other drugs will be discontinued at some point during therapy because of lack of measurable efficacy.  A portion of the dollar savings achieved by the termination of drugs can be reallocated to offset the increased cost of the diagnostics used to assess drug efficacy on a much broader basis.

Needless to say, broader scrutiny of the therapeutic efficacy of drug therapy and terminating proven ineffective therapy will not be greeted with enthusiasm by the pharmaceutical companies despite the fact that the technology exists to mount such programs and the idea aligns closely with a fundamental principle of medicine -- Primum, non nocerum (First, do no harm). Fortunately, neither GE or Siemens, as compared to Roche, has any stake in drug manufacturing. Perhaps they may be willing to throw their weight behind these efforts.

The Benefits and Risks of Treating Celebrity Patients

In a recent post, the healthcare blogger of the Wall Street Journal , Jacob Goldstein, asked  why Senator Ted Kennedy went to Duke for his brain surgery rather than to Mass General which is in his own back yard (see: Why Did Sen. Kennedy Get Treated at Duke?). Below is an excerpt from the note with boldface emphasis mine:

When the world learned Ted Kennedy had brain cancer, he was being treated at Boston’s Massachusetts General, a world-renowned hospital in one of the richest lodes of medical expertise anywhere in the world. So why did the senator travel all the way to Duke University Medical Center in North Carolina for surgery today?  Certainly Allan Friedman, the neurosurgeon who performed the operation has a sterling reputation for operating on brain tumors....In particular, Friedman has a reputation for operating aggressively on hard-to-reach tumors that may be difficult to remove without damaging healthy brain tissue....And sometimes, patients will travel if they’re interested in participating in a clinical trial offered by a particular institution....But there’s no evidence that Kennedy, who will return to Mass. General for chemotherapy and radiation, is participating in that trial.

There are risks associated with treating a celebrity patient, both for the patient himself and also for the hospital and physicians treating the patient. Celebrities often have the option, as in the case of Kennedy(s), of picking the best surgeon and hospital in the world for treatment. This obviously tends to work toward their advantage. The risk incurred by a celebrity status, however, is that hospital personnel and physicians are forced out of their normal routines by the ballyhoo surrounding the admission and treatment of the patient. Everyone in healthcare knows that mistakes tend to be more frequent when hospital personnel are forced out of their normal routines. These problems are exacerbated if a "John Doe" medical record is generated for the celebrity to avoid prying eyes without links to previous electronic records. To create such links negates the value of creating the anonymous record in the first place.

What are the risks to the hospital and treating physicians of a celebrity admission? A bad result, obviously, can harm the reputation of the hospital, particularly when malpractice is uncovered (see: Dennis Quaid Twins Hospitalized). There is no question in my mind that Dr. Allan Friedman (no relation) is one of the leading neurosurgeons in the country. I am also equally confident that the neurosurgical procedure could have been performed equally well on Kennedy at Mass General. However, I suspect that there were some sighs of relief at the Boston hospital when Senator Kennedy headed south for his tricky brain tumor resection but decided to return to Boston for his chemotherapy and radiation treatments (see: Next up for Kennedy: Chemo, radiation).

Physican Blogs Criticized on Basis of Privacy Issues

Blogs authored by physicians are starting to attract more attention, particularly with regard to patient privacy issues (see: Doctor Blogs Raise Concerns About Patient Privacy). Below is an excerpt from this article with boldface emphasis mine:

[Physician-authored] blogs have raised concerns about privacy issues on the Web.....One physician blogger, who draws about 12,000 readers a day, is New Hampshire internist Dr. Kevin Pho. His blog, "Kevin, M.D.," offers a doctor's eye view on medical issues that appeal to both his peers and the public."...Blogging can be a great marketing tool for raising a physician's profile and attracting new patients, says [a healthcare consultant]. But not all physician blogs are geared toward marketing. In fact, just the opposite seems to be the case in some extremely candid blogs, like "White Coat Rants," "Cancer Doc" and "M.D.O.D.," which bills itself as "Random Thoughts from a Few Cantankerous American Physicians." These are more like diaries in which doctors vent about reimbursement rates, difficult cases and what a "bummer" it is to have so many patients die....Dr. Deborah Peel, a psychiatrist and founder of the group Patient Privacy Rights, thinks physician blogs often step too close to the limits of patient privacy."The problem with physicians blogging about patients is the danger that that person will be able to identify themselves, or that others that know them will be able to identify them," she says.

My own thoughts about physician bloggers are mixed. On the positive side, I think that they put a human face on physicians and the practice of medicine. They thus enable patients to better understand some of the complexities and pressures facing physicians on a daily basis. Clearly, none of the physician bloggers would ever name the patients whose cases they might reference in the blog. Nevertheless, a patient referred to even anonymously may be able to identify himself or herself. I personally would view this as a breach of confidentiality. I don't follow these physician blogs but the best strategy for them, I think, would be to refer to patients only in a veiled and abstract manner if at all. I will make it a point to follow Kevin M.D. more closely in the future. His numbers suggest that he has developed an enthusiastic groups of readers.

Growth of Walk-In Clincs Slows Down

I have posted as number of previous notes about walk-in clinics. I had latched onto the idea that such clinics would serve as a new model for healthcare delivery, offering reasonable prices and convenient locations. It now appears that there was probably too much hype associated with this new form of service and there has been a noticeable decline in the opening of new facilities. A recent Wall Street Journal article provides the details (see: Health Clinics Inside Store Likely to Slow Their Growth). Below is an excerpt from the article with boldface emphasis mine:

The boom in walk-in health clinics located inside pharmacies, supermarkets and big-box retailers is showing signs of slowing.[See the chart at the left illustrating the largest walk-in clinic operators in the U.S. as of May 1, 2008.] Hailed as an inexpensive option for treating minor health ailments like sore throats and rashes, the retail clinics have grown in number to 963 as of May 1 from just 125 three years ago. The clinics typically feature nurse practitioners who can prescribe basic drugs, and the price for a visit ranges from $50 to $75. But in recent months, retail health-clinic operators based in New York, Nevada, Indiana and Alabama have closed their doors, shuttering 69 clinics in 15 states...Now, the biggest retail-clinic operator, CVS Caremark Corp., says it is scaling back expansion plans for its MinuteClinic brand...Research shows that patients are enthusiastic about the clinics' convenience and quality of care, but acceptance has been slow...Some operators are finding that the clinics are complex to manage. Earlier this year, CheckUps, a clinic operator based in New York, abruptly closed 23 clinics that it operated inside Wal-Marts in Florida, Mississippi, Alabama and Louisiana....Not everyone is trimming sails. Walgreen Co. says it still plans to more than double the number of its Take Care health clinics this year by adding about 240 locations between now and the end of the year, bringing it closer to the number operated by rival CVS.

My sense is that this apparent slowdown in walk-in clinics is due to the fact that some of the operators did not really understand the business. In other words, part of the bubble has burst. Some of the existing clinics are pursuing new business models such as establishing relationships with local healthcare systems in order to ensure a better referral network. However, I hope that such relationships do not result in a distortion of the basic walk-in clinic business model such that they begin to more closely resemble physician office practices with all of their inefficiencies and opaque pricing policies.

Search Engine for Healthcare Professionals

Search engines have been a critical factor in making the web so useful. I am personally partial to Google. I also find Google Scholar useful when researching complex medical topics. I often tend to use it even before PubMed. In fact, Google Scholar can be used as a portal to search medical article archived in PubMed. Here is a brief description of PubMed:

PubMed is a service of the U.S. National Library of Medicine that includes over 17 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources.

Now comes news about some recent refinements of a search engine designed specifically for healthcare professionals but also available to healthcare consumers (see: SearchMedica Offers Medical Professionals Six New Specialized Clinical Web Searches). Below is an excerpt from the article with boldface emphasis mine:

SearchMedica.com, the leading search engine for medical professionals, today unveiled six new searchable disease categories. Now, medical professionals can search the Web for credible, clinical information within general medicine or eight more specific categories....Although SearchMedica encourages medical professionals to register to receive updates about new content and tips on how to use various advanced tools, registration is not required....SearchMedica provides free, open access to the Web's most authoritative content for medical professionals. The new organization of disease categories keeps with this mission and simplifies the search process for medical professionals....Medical professionals consistently use SearchMedica with a patient's symptom or disease state in mind....Specialists, however, can refine their search into one of eight therapeutic categories. These categories...include cardiovascular, diabetes/endocrine, infectious, musculoskeletal, cancer/hemic, pediatric, mental/nervous system and respiratory disorders.

I found SearchMedica.com to be sophisticated and very well organized. For example, searching for the keyword anemia in the cancer/hemic category yielded 102,760 results. The opportunity is then provided on the data retrieval page to further refine the search using the following categories: Research/Reviews (15684); Evidence-based Articles (1799); Practice Guidelines (995); Practical Articles/News (4884); Patient Education (3575); Clinical Trials (8142); CME (301); Complementary Medicine (97); and Practice Management (269). In the left hand column of the retrieval page, the option is also provided to narrow the search on the basis of the following types of anemias: normocytic anemia, hemoglobinopathy, infectious anemia, aplastic anemia, cell anemia, chlorosis, spastic anemia, deficiency anemia, macrocytic anemia, and gaucher disease.

I am definitely going to turn to SearchMedica more in the future when the need arises for me to learn more about various diseases. It's a wonderful resource.

A Web Site for Calculating Radiation Exposure

Radiology and radiologists seem to be on the defensive on two separate fronts. The first is that the cost of medical imaging procedures is being closely scrutinized by payors (see: Some Dark Clouds on the Medical Imaging Horizon). The second is that various groups, including consumers, are paying more attention to radiation exposure during such procedures. Despite the fact that the radiation dose associated with any individual procedure may be relatively small, the number of procedures per patient over a lifetime of care is increasing. The number of procedures per each complex workup is also increasing.

A recent note by David Williams of Health Business Blog (see: Chastizing Aimee) discusses a web site that provides a tool for for calculating patient exposure during medical imaging procedures called Aimee. Below is an excerpt from his note with boldface emphasis mine:

American Imaging Management (AIM), a radiology cost containment company owned by health insurer WellPoint, has a web-based patient exposure tool called Aimee that provides information for doctors and patients about the amount of radiation associated with various scans. The site is well-designed and easy to use. Simply click on the relevant scan and portion of the anatomy and the site provides a summary of the purpose of the exam and suggests safer alternatives when appropriate. At the bottom of the page is a display that expresses the radiation exposure in millisieverts (mSv) and as its equivalent in chest x-rays and background exposure. I like the site because it raises awareness about radiation exposure and provides alternative recommendations patients could discuss with their physicians.According to AuntMinnie, a radiology news and information site, some physicians [i.e., radiologists] are less sanguine [about the value of the site].

The criticisms that are being leveled at this radiation exposure website by radiologists include the following: (1) the ownership of the site by a radiology cost-containment company that has a stake in reducing imaging costs; ( 2) the oversimplification of a complex scientific topic; (3) the lack of relevance of the tool for pediatric patients who receive lower exposures; and (4) the lack of discussion or promotion on the web site of the myriad benefits of medical imaging.

I agree with David on this matter that some of these criticisms are valid but the general goals and values of this patient-oriented tool are beneficial for healthcare consumers. For me, this goal is to increase consumer awareness of exposure to radiation in diagnostic studies. The notion of a well-informed medical consumer is pivotal to the concept of Health 2.0 that I have previously discussed in Lab Soft News. If I were a radiologist, I would work through my professional societies to try improve the quality of Aimee based on some of the criticisms listed above.