by Malorye Allison
October 10, 2008 at 12:25 pm · Filed under Consumer Engagement, Health IT, 4th WHCC, Business of Health
The biggest hurdle to building a social networking site for health care consumers is that “People worry that its just going to become a dumping ground for complaints,” says MaryAnn Stump, senior vice president and chief innovation officer at Blue Cross and Blue Shield (BCBS) of Minnesota, and president of Consumer Aware, which is a sister organization of BCBS. One year after launching in Minnesota’s metropolitan market, however, HealthcareScoop.com has three times as many positive comments as negative ones. The site is now officially going national, although Stump points out “Even before we promoted it nationally, we had comments coming in from more than 20 states.”
“That shows the opportunities are without boundaries,” Stump says. To join the site, patients don’t even have to be BCBS members, “These are anyone’s stories about physicians, health plans, anything health related,” she says. “The lens is the patient’s eye.”
Patients post their stories anonymously, and the site does have rules to discourage illegal or disruptive postings. Comments are also invited. In the last year, almost 700 stories have been posted and the site has logged more than 500,000 page views. The stories range from glowing reports about a favorite gastroenterologist to complaints about getting a “runaround” from administrative staff at a particular institution.
HealthcareScoop.com is just one of a slew of intriguing projects aimed at getting more input from consumers on health care. I’ve also written here about PatientsLikeMe.com and Microsoft’s ambitious HealthVault personal health record project. It’s all part of a new paradigm shift that has many in the health care field scrambling to catch up.
For example, soon after the site launched, Stump says, “Someone wrote to us saying ‘People are complaining about the long wait time at our institution, what are we supposed to do?’” Stump then asked if the institution’s wait time was, indeed, a problem. “The answer was yes, and the logical step after that of course is to fix it,” she says.
A lot of concerns were voiced before the site was launched, but given the pace that social networking is advancing, the company felt confident that this was necessary now. For one thing, the site helps to differentiate BCBS from its competitors. It also helps BCBS’s relationship with local providers. “It helps us connect the providers to their patients in a new way,” she says.
Starting out, there were also concerns from providers that BCBS would use information gathered from the site when contracting with physicians. “It’s not our intent to do that,” Stump says. But she was pleased to hear that providers are starting to monitor the site. “It’s definitely a chance to learn what is not working from the consumer’s point of view.”
“This is new territory,” she emphasizes, “And this is how the younger generation communicates. It will not be for everyone, but it was never designed with that in mind.” Another concern was that people just wouldn’t post stories about health issues. The company tested the site internally to see if they would, and they did.
Asked what tangible benefits BCBS does expect Stump says “You either start with a business model, or you start with an unmet need and connect to a business model.” HealthcareScoop.com is an example of the latter. Down the road, however, BCBS would like to see if the site can be tied into disease management, for example. “We’re thinking about things like effective diabetes management measures and aggregating certain types of stories,” Stump says.
Stump’s point of view is that it’s unwise not to try and make such connections with consumers. “The cat was out of the bag once we launched consumer-directed models,” she says “Now we have to provide the tools for patients to make choices as customers, rather than as passive recipients of care.”
by Malorye Allison
October 6, 2008 at 12:23 pm · Filed under Policy Makers
McCain would pay for his planned healthcare tax credits – the cornerstone of his reform plan — with savings from Medicare and Medicaid, said Douglas Holtz-Eakin, McCain’s senior policy advisor, according to a report today in The Wall Street Journal. Holtz-Eakin said McCain would reform payment policies and eliminate Medicare fraud to reduce costs. “It’s about giving them the benefit package that has been promised to them by law at lower cost,” the paper quoted him as saying.
Over the weekend Obama brought health care reform back into the spotlight focusing on McCain’s plan to offer a new healthcare tax credit of $2,500 per person and $5,000 per family. McCain would also have the government tax the health insurance benefits people receive though work. The idea is for people to shop for the best coverage deals.
Until now, McCain’s campaign has repeatedly said his health care plan was budget neutral, and aides have suggested he would apply both an income and payroll tax to health benefits. But according to the WSJ report “Holtz-Eakin said the campaign never intended to apply the payroll tax to health benefits.” This new detail means that McCain’s plan would lower taxes for most people, but that he’ll have to find new revenue sources to make it budget neutral, hence the new focus on reducing Medicare and Medicaid costs.
Obama launched four television ads in key states criticizing McCain’s health care plan. He also spent the weekend attacking McCain’s plan in speeches, calling it “a shell game” that would still leave many people without insurance.
by Malorye Allison
September 26, 2008 at 12:02 pm · Filed under Disease Management, Employee Health Management
The good news yesterday was supposed to be that even though consumers are spending more for health insurance, those costs are rising more slowly than in prior years. According to Kaiser’s 2008 Employer Health Benefits survey, premiums rose an average 5% in 2008, which is close to last year’s figure and still digestible compared to the more than 10% increases seen a few years ago.
But plenty of more worrying facts emerged during the press conference yesterday, here are the two biggest ones:
• Many more employers may drop coverage, or significantly reduce their contribution, next year.
• Few employers are convinced that anything we are doing now is saving money.
Why will coverage erode? “The majority of employers make decisions about health care coverage in September and October,” explained Drew Altman, president and CEO of the Kaiser Family Foundation. “When they were making those decision last year, the economy still wasn’t doing badly.” The only reason coverage still looks as good as it does for American workers is “The time lag,” Altman said. “I expect next year to see a decline in coverage, both in terms of number of employers offering coverage and how much coverage they do offer.”
It’s not surprising that more employers are trying to shrug off the health care benefits yoke. Costs keep rising. And nothing we do seems to help very much. Kaiser asked the almost 3,000 employers surveyed how the following cost containment strategies worked: tighter managed care networks, consumer-driven health plans, higher employee cost sharing, and disease management programs.
The best rating any of these got was disease management programs, which 28% of all large employers thought were “very effective.” That’s dismal, but it’s not surprising either. Asked about wellness programs in particular, Altman pointed out that “These do seem to improve health but don’t appear to help reduce costs.” Most employers, he said, now view these programs as good for “productivity” but not for health care cost-containment.
All this combines to deliver a shriveling employer-based health care system, especially among smaller firms:
• During the last nine years, premiums have more than doubled, while wages increased only 34% and general inflation rose 29%.
• More than one in three (35%) of covered workers in small businesses (3-199 workers) now have a deductible of at least $1,000.
• Virtually all large firms still offer health insurance, but only 62% of smaller firms do, and only 49% of the very smallest (3-9 workers) do. Altman described coverage at small firms as “increasingly like what you’d find on the individual market.”
• Workers in small businesses also pay about $1000 more for family coverage than those at larger firms.
• Over the last nine years, the number of large firms offering retiree health benefits has dropped from 66% to 31%.
• Asked about next year, 14% of firms said they were “very likely” to raise workers’ premium contributions then, and 12% said they were “very likely” to raise deductibles.
In short, most consumers will be paying more for health care as time goes on. Workers at small firms will be especially pressed. It also looks like there is finally enough activity around consumer-driven health care to start asking how it’s performing. At small firms, 13% of employees are now enrolled in plans with high deductibles and Health Savings Accounts (HSAs) or Health Reimbursement Arrangements (HRAs). The number of employees in large firms enrolled in such plans has stayed constant over the last two years, and is about 5%.
In the Kaiser survey, employers did not seem too optimistic about the consumer-driven plans. Only about 15% of small employers thought the plans were very effective at reducing costs. Most of them rated the plans as “somewhat” or “not very” effective. Altman added that “The consensus of economists is that higher copays and higher deductibles lead to fewer uses of health care and less spending, but, that is a blunt instrument that cuts out both effective and ineffective care.”
Finally, there are probably much bigger premium rises in store, according to Jon Gabel, one of the survey authors and a senior fellow a the National Opinion Research Center (NORC) at the University of Chicago. “A lot of the health insurance companies underestimated costs, and the premiums may be too low,” he said. That’s why Wall Street has been punishing them.
Note: The full survey is available online at www.kff.org/insurance/7790/index.cfm. The Health Affairs article based on the survey is also available online to subscribers at www.healthaffairs.org or via the free link at the Kaiser Web site above.
by Malorye Allison
September 16, 2008 at 4:14 pm · Filed under Consumer Engagement, Business of Health
Peter Neupert is Corporate Vice President, Health Solutions Group, at Microsoft, which is charging into the personal health record field with HealthVault. After the recent spat of articles and editorials in Health Affairs debating health IT strategy, I was eager to hear Peter’s view on the “standards first?” controversy and how Microsoft sees the emerging consumer health world.
The company is betting that consumers will dive in and start demanding online records as a better and easier way to manage their health care. “No single silver bullet will transform something as interconnected or complicated as health,” Neupert says. “We believe consumers will be the primary actors of change because they are the voice that has been least heard.”
“Most incentives are around the needs of payers or providers,” he adds. “When people ask how they can impact things that are costing the most, such as chronic disease, the big gain is clearly around how we influence patients. To do that, we need to change how we interact with consumers.”
Consumers themselves, he says “Want more information and better access, especially if they have to interact with the health care system frequently.”
But consumers won’t sit and type their health data into online forms themselves, nor will they chase down all their providers and ask them to do it. For Health Vault to succeed, Microsoft itself needs to bring those providers along, and to add plenty of new layers of function to its offering as well.
“We need to reach the point where patients are saying ‘Aha, this makes my life easier,’” Neupert says.
It will take a lot more to fulfill the whole vision — that beautiful dream of a networked U.S. healthcare system, with networks all over the country seamlessly connecting to deliver optimal care to patients no matter where they have ended up seeking care.
I also asked Neupert where he stands on the recent “standards debate” that erupted in the latest issue of Health Affairs, and whether the U.S. health IT initiative is indeed constrained by an overreliance on technical standards.
He agreed there is too much focus on standards. He thinks we should put the highest priority on getting the content right, and once that’s achieved, standards will naturally follow. In the meantime, “There is a ton of value we could be getting out of the data today.”
Peter sees today’s emphasis on standards as a straw man. “The world of software is not like the physical world,” he says: When building things like railroads, having standards from the start is crucial, or you end up with multiple small networks rather than a seamlessly interconnected whole. “Software allows for translatable interoperability,” he says. “If the data isn’t interoperable, it’s because people don’t want it to be.”
Exactly how will that one seamless mega-network arise if groups are working from different platforms at first? The answer, he says, lies in the metadata – the details that describe the data, and how it has been captured.
“Our focus is on metadata-driven translational interoperability – to get data moving better, faster,” Neupert says.
Of course, not everyone is thrilled to see a software giant like Microsoft striding into the personal health record field. Some bloggers are quite alarmed by the prospect, and have pondered what the company’s evil intentions must be or how keeping one’s health records on the web could horribly backfire. I’m sure we’ll hear plenty more about that too.
In the end, either the whole field will quickly crest, making the early entrants really glad they got that quick start, or, it’s all a straw man and only a minor subset of us will ever be managing our health records online.
By the way, Neupert now has his own blog called “Neupert on Health.”
And you can read those Health Affairs articles here.
by David Harlow
September 10, 2008 at 3:51 pm · Filed under Insurance, Industry Sector, Employer CEOs, Policy Makers, Regulators
David Harlow is a Boston area health care lawyer and consultant who blogs regularly at HealthBlawg
Massachusetts has famously gotten many of the state’s uninsured covered thanks to the state mandate. The “pay or play” approach taken has long seemed ripe for an ERISA pre-emption challenge (cf. the Wal-Mart case in Maryland). The program now seems to be a victim of its own success, with enrollment in subsidized plans exceeding expectations, and the Commonwealth looking for additional revenues to fund the $130M shortfall. One approach now proposed is to apply the “pay” part of the pay or play rule to a broader swath of employers — including many that have been “playing” by the rules to date.
As the Boston Globe reported last week,
The current law requires most employers with more than 10 full-time employees to offer health coverage or to pay an annual “fair share” penalty of $295 per worker. It gives companies an option of paying at least 33 percent of full-time workers’ premiums within the first 90 days of employment or making sure that at least 25 percent of their full-time workers are covered by an employer plan.
But the proposed new regulations would require employers to meet both requirements, or pay the penalty. The rules, if adopted, would take effect Oct. 1 and raise about $45 million this fiscal year, according to state documents.
The Globe article notes that Matt Fishman, VP for community health at our local 800-pound gorilla, Partners Healthcare (the biggest health care system, and also the biggest employer, in the Commonwealth) argued against that change not because Partners would rather not comply, but because the change, he fears, would open the doors to a legal challenge.
The commentariat and blogerati have been divided to date on whether the Massachusetts version of pay or play would survive an ERISA preemption challenge. (Examples here, here, here and here.) Personally, I have taken the cynical-realist approach, expecting that so long as the penalty for not playing remained as artificially low as the $295 a head figure in the initial Massachusetts rules, and the definition of “playing” was as expansive as it has been, it would not be worthwhile to mount a challenge. I agree with Matt that ratcheting up the stakes in the pay or play game make it more likely that someone will pull the trigger and initiate an ERISA pre-emption challenge.
I won’t hold my breath waiting for an amendment of ERISA that would eliminate the possibility of such a lawsuit — Some have been waiting for such an amendment for years; some have been inveighing against it as leading to an unworkable morass of state-by-state mandates that would be difficult for large employers to comply with, which is what the ERISA provision was intended to avoid in the first place. Of course, if this country is really ready for health care reform in a big way (a very big if), this will become a moot question.
– David Harlow
by Jody Dzuranin
September 9, 2008 at 10:32 pm · Filed under Prevention and Health Promotion, Wellness
I recently attended a forum of workplace wellness managers and they voiced similar frustrations of employees who were pushing back against taking the health risk assessment. The main reason cited is the fear that this personal health information will be used against them by their employer or their health insurance company. No matter how many incentives (or disincentives) were on the line, people do not want their employer dictating health behavior change. It led me to ponder our current structure. Why does it fall to the employers to try to convince their employees to lead a healthy lifestyle? It is not a comfortable position for the employer or employee. I really don’t think my boss needs to know what I weigh, but in small companies who are administering their own HRA, that is exactly what is happening. If I know my employer is going to see this information, I may not be honest in answering these personal questions. (I expect that the weight question and number of drinks per week are the 2 questions that are answered dishonestly most often). Something needs to shift in this model. On one hand, I think it is very important that the consumer (patient) has access to as much of their personal health information as possible, to become a good “self leader” as Dee Edington, PhD calls them. A good self leader will share their health information with their health professionals and take an active role in their own wellcare plan. On the flipside, who has more motivation than the employer who pays the expensive health insurance premiums, to make this helpful health information available to the employee? The right spot for it would be to come through the health professionals, but mostly people only see their doctor when they are ill. Who is responsible for wellcare? I think healthcare, health insurance and personal health information has become over-complicated to the point where the patient feels like an observer, rather than an active participant in the process. If we can streamline and simplify, we can bring the consumer back into the center of this unbalanced equation.
This post seems to raise more questions, than provide answers. Hopefully I will have more to share next week. I will be blogging at the 4th Annual Consumer Healthcare & Wellness Congress in Washington DC, September 15-17, 2008. I look forward to learning which corporate wellness, health prevention and promotion initiatives are gaining traction with employees and saving money. I am sure there will be lots of “healthy” conversation on this topic and more. I hope to see you there!
by Malorye Allison
September 5, 2008 at 2:18 pm · Filed under Uncategorized, Policy Makers
It was the briefest mention possible, but at least John McCain did touch upon health care in his acceptance speech last night at the Republican National Convention.
McCain spent a bit more time bashing Obama’s approach then discussing his own: “My health care plan will make it easier for more Americans to find and keep good health care insurance. His plan will force small businesses to cut jobs, reduce wages, and force families into a government-run health care system where a bureaucrat stands between you and your doctor,” he said.
The “c” word was used liberally throughout his speech, such as when he declared that, “We need to change the way government does almost everything.”
At a glance, McCain’s health plan is indeed the more radical of the two, because he’s aiming to reform the tax code and his approach could impact the longstanding employer-based health insurance system. Currently, employers who pay for their workers’ health insurance can exclude every dollar of that from employee income and payroll taxes. This translates to a massive tax break for those workers.
MCain’s uniform tax credit system means everyone gets the same break – a $2,500 credit for individuals, and $5,000 per family.
So, the first question is, if McCain wins, can he possibly get support for this when the Democrats want something so very different? As, the ReformPlans Comparison Grid shows. the two candidates are at polar opposites on the specific steps to reform health care. Obama has shown some flexibility on how he approaches health care reform, but many of the Democratic lawmakers are still emphasizing the steady expansion of public programs. A significant number of those lawmakers would love to have a single-payer program.
Is compromise possible? Or under McCain, would we just see more of the same dreadful impasse?
Finally, neither McCain nor his rival has really explained how they are going to make health care more affordable for anyone – patients, employers, or the government.
Recently Aon Consulting Worldwide released data that health care costs will increase about 10.6 percent over the next 12 months. The good news was that this is the smallest increase in years. But the bad news is that there is rising evidence that we have squeezed most of the benefits out of all those little fixes – disease management, wellness, and generics drugs.
Meanwhile, growth in Medicaid costs is eating up state budgets.
Pretty soon, we need to address the root problems here. The U.S. health care system must be re-engineered so there is a real correlation between spending and value. Only someone brave enough to wrestle with that problem is going to have any effect.
Unfortunately, health care seems to be totally eclipsed by the economy and Iraq right now. We must hope that some of the rumblings from people like Senate Finance Committee Chairman Max Baucus and the Bipartisan Policy Center are signs of real determination to keep this issue alive.
by Lola Butcher
September 2, 2008 at 4:47 pm · Filed under Uncategorized
Dr. Paul Ginsburg, president of the Center for Studying Health System Change, underscores the difficulty of turning passive patients into savvy shoppers:
I don’t think consumers are going to be very receptive to using price information until they have more confidence in understanding the quality of different providers… Consumers can actually act perversely in the sense of not having confidence in the quality information, and equating higher price with higher quality, and thus shifting to higher priced providers, even if they actually reduce their quality of care in the process.
At the World Congress on Consumer Healthcare and Wellness in mid-September, Dr. Ginsburg will participate in a panel that addresses something everyone in health care is wondering about: Will Consumers Be Effective Catalysts to Reform the U.S. Health System?
Here’s part of our conversation:
Butcher: You just released a study that says 56 percent of American adults - that’s more than 122 million people - sought information about a personal health concern from a source other than their doctor during 2007. Does this suggest that Americans are becoming more active participants in their healthcare decision making?
Ginsburg: Oh, yes, they certainly are. American’s interest in their health has increased a great deal, say, over the past decade. We just know how much more space newspapers and television is devoting to personal healthcare issues, and of course we have a lot of development on the internet as far as sites that people can go to seek this information.
Butcher: Many health plans have developed consumer support tools - speaking of the internet - such as online information about hospital and physician quality, and calculators that help plan members estimate the cost of care. Are consumers using these tools, and if so, how are they using them?
Ginsburg: Well, I’ve spoken to the plans, and the plans are all eagerly developing these tools. So when you ask them, Are consumers using them? They don’t know.
My sense is that this is clearly the direction long-term where plans will play an increasingly valuable role as an information intermediary. But I think we’re at the very early stages of it, and I doubt that there’s a lot of use. I doubt that consumers are depending on it.
One of the chicken-and-the-egg problems is that I don’t think consumers are going to be very receptive to using price information until they have more confidence in understanding the quality of different providers… Consumers can actually act perversely in the sense of not having confidence in the quality information, and equating higher price with higher quality, and thus shifting to higher priced providers, even if they actually reduce their quality of care in the process.
Butcher: Is America’s healthcare system organized in a way that allows consumers to be effective shoppers for healthcare services? And does the healthcare marketplace respond to consumer behavior in the same way that the retail marketplace works?
Ginsburg: No, the healthcare system is very far from accommodating consumer desires, to the degree they have them, of being effective shoppers. For most cases, medical care isn’t standardized enough that you can just call up places and, knowing what you need, find out what the price is and the indicators of quality. Because so much of health care involves diagnosis, checking into what something is going to cost (and learning about) a provider (requires the patient) to invest a lot of time and money to make that call.
If you go to the dentist, if you need an inlay put in, a dentist won’t give you that over the phone because they’re going to say it all depends on the details of your condition. So, you’re going to have to invest the time and money of visiting a dentist to get an estimate.
So, I don’t think the healthcare consumer will ever be able to be as good a shopper as in other areas.
by Lola Butcher
September 2, 2008 at 4:20 pm · Filed under Business of Health, Hospital Administration
This is the kind of remark that gets my attention:
Throughout the country, I’m seeing more and more reports where you have people checking into hospitals, into clinics, and so forth, and they are posing as the individual who owns this particular social security number and/or insurance policy, and they’re either getting medical treatments under that person’s insurance, or they’re getting pharmaceuticals, prescription drugs, under that person’s medical insurance.
That’s from Robert Siciliano, chief executive officer of IDtheftsecurity.com, who spoke to me about medical identify theft.
Mr. Siciliano will speak at the upcoming World Healthcare Innovation and Technology Congress later this year. Here’s more of our conversation….
Butcher: Information technology is in the process of transforming healthcare delivery. Patients are telling physicians about their symptoms over e-mail and checking their lab tests on line, to give just a couple of examples. What security issues should hospitals and physicians be thinking about?
Siciliano: First, it does start with your information technology administrators. They are responsible to protect you from the outside–from criminal hackers– and from the inside, if you happen to have a bad seed working within your organization. So, it all starts with the IT administrators. The physicians themselves, and the employees at all levels, need to understand what their responsibilities are regarding safety or security and privacy policies, and those policies must be enforced at all times.
Butcher: If a patient’s personal healthcare information does end up being stolen from a hospital’s computer system, what happens? What is the hospital’s liability?
Siciliano: Over the past few years, there have been some major, major breaches of personal information at the government level, corporations, associations, healthcare, insurance companies - you name it. Just about every industry has been affected by a data breach at one level or another.
And as a result of this, state to state, they have passed data breach notification laws, which require corporations–entities whose information has been compromised–to disclose that breach and to make sure that they notify those who have been affected by that breach, so that those people can then go out and take the necessary steps in getting protection, in getting some type of insurance, or credit monitoring, whatever the case may be, so that their identity is not further damaged as a result of that breach.
Unfortunately, criminal hackers have changed the motivation significantly over the past few years, and they are really targeting everyone. I mean, nobody is immune.
Butcher: It seems to me that protecting against identity theft ultimately is the individual’s responsibility. Do you see this changing in the future, and if so, how?
Siciliano: Unfortunately, it is absolutely the individual’s responsibility. While the organization may be responsible for doing their part to keep that data safe and secure, ultimately, if it is compromised, it is in the personal identifying information, including name, address, and especially social security number, that individuals are ultimately responsible for self-protection.
Responsibilities do boil down to managing your own personal information, and ultimately making sure that, even if they do get that data, that there’s not a whole lot they can do with it.
Butcher: What should health care executives know about medical identify theft?
Siciliano: First, I think it’s very important that everybody understand the extent of the problem, that the issue of medical identity theft is becoming an ever bigger problem.
Identity thieves have been working at this for as much as 20 years now, and they’ve figured out just about every single way to compromise our information, and then turn that data into cash.
by Malorye Allison
August 29, 2008 at 1:07 pm · Filed under Uncategorized, Drug Development, Health IT
As Web 2.0 tools infiltrate health care, some surprises are in store. PatientsLikeMe.com highlights one of the big ones: Here’s a site that extols the virtues of sharing your health data, warts and all so to speak, with as broad an audience as possible. The patients use aliases, but they all share detailed medical data with each other, and 10% of them open up their data to the whole world.
“We flip the whole privacy thing on its head,” Benjamin Heywood, one of the site’s founders, told me last week. The notion that people wouldn’t dare share health information was one of the early obstacles for social networking in health care. PatientsLikeMe has the most daring and ambitious model, but a flurry of other similar sites, including Trusera.com and HealthCareScoop.com have followed.
PatientsLikeMe differs from most of these in a critical way. This is not what you might expect it to be – a chummy site where you can chat with numerous fellow sufferers about what it took to get your shingles properly diagnosed and why you think Vitamin C supplements helped the most to control them.
At PatientsLikeMe, people do give each other support, but they also contribute real, measurable data, including symptoms, and effects of a range of interventions, including test scores and lab data, depending on the condition.The idea of wide-open data sharing is part of the company’s philosophy: “When patients share real-world data, collaboration on a global scale becomes possible,” it reads on the website.
That data is the kind researchers can actually use in studies. And that’s the site’s unique business model – partnering to do real research. The site is poised to offer a new way to do clinical trials and disease management.A quick tour of the site brought me face-to-face thousands of people and their data – the drugs they are taking, how their disease is progressing, and myriad other possible details, such as whether the patient said a prayer that night. Many of the patients include real photos of themselves.
Clicking through it, at first I was very surprised at how much people were willing to reveal. But I’ve heard patients gripe about the downside of privacy before. Many want more people to know about their problems. They think that’s the best way to find real solutions more quickly. The sites’ founders agree.
“The site makes it easy to aggregate patient experiences,” Heywood says. “We are explicit and transparent, and by engaging patients in data sharing, we’ve found a way to engage industry as well.”
PatientsLikeMe only has five groups running so far – ALS (amyotrophic lateral sclerosis, or Lou Gehrig’s disease), HIV, multiple sclerosis, mood disorders, and Parkinson’s disease, but they have just over 17,000 patients contributing to the site and Heywood estimates that in 3 to 4 years they will have the equivalent of “200 Framingham Heart studies” going on, involving about one million patients.
The site has several partners, including Novartis, and some intriguing findings already coming in. Recently the site was able to rapidly accelerate research into a potential therapy for ALS — a rare but lethal neurodegenerative disease. ALS was the site’s founding group: The company was formed in part to try and help one of Heywood’s brothers who was suffering from the disease.
The site already has over 2,000 ALS patients contributing data, and was in a good position last winter a when a study came out on the promising effects of using lithium, an old standby psychiatric treatment, to slow ALS. That study looked at about 40 patients who were using lithium in combination with the only other FDA-approved drug for this condition, riluzole. When the study came out, only about 25 ALS sufferers on PatientsLikeMe were taking the drug.
Within just a few months, however, that number has soared up to 250 and the site is effectively carrying out its own clinical trial.
“Now we have data on all those patients, blood levels of the drug, side effects,” Heywood says. So PatientsLikeMe and its partners will be able to take a much closer look at lithium’s effectiveness.
It’s easy to find problems with this approach, but traditional clinical research is itself fraught with many ghastly problems, including massive costs, a painfully slow trajectory, and a lot of cumbersome “privacy” issues. Meanwhile, we’re at the point where people are increasingly skeptical about what traditional research finds. Merck’s ill-fated Vioxx, for example, was the subject of countless traditional trials before it’s dangers were revealed.Another intriguing finding is that members of the site’s Mood Disorders community are finding that they are spending less time in the hospital since joining the group.
“We think this is potentially a very effective disease management platform,” says Heywood. “Health plans have very few good options with mood disorders, if this works it’s going to be attractive.”It’s far too early to call PatientsLikeMe a real business success, but at least the site is teaching us some important lessons. Clearly, everything we thought about privacy may not be true. Maybe it’s time to rethink some of our other preconceived notions about health care as well?For more information about that lithium study, go here.
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