Introduction
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Companies are experimenting with social networking to speed clincal trials and even drug discovery.
Enrolling patients in clinical trials is a perennial challenge for sponsors. One-third of trial sites fail to recruit a single patient and fewer than 20% of clinical trials are completed on time, with about half of the delays attributed to patient recruitment. Oncology trials in particular are failing to meet enrollment goals (Box 1).
Some see social networking tools on the web as a remarkable opportunity to galvanize the process of patient recruitment, perhaps even a chance to completely reinvent the process of clinical research itself. But new technology adoption in clinical trials has traditionally been slow. After years of complaints from investigators and companies about how tedious and inefficient paper-based trials are, still just half of all clinical trials use electronic data capture, according to Jim Rogers, CEO of Nextrials (San Ramon, CA, USA), a software provider. "Electronic data capture has a fair amount of traction." But that doesn't mean other information technology tools would by welcomed by the professionals who plan and run trials.
For one thing, using social networking in this way raises some worries, particularly around privacy issues. "We are treading lightly in the area of social media, because there are a lot of concerns about disinformation on the web and HIPAA," says Gretchen Goller, patient recruitment and compliance strategist at Sanofi-Aventis (Paris). (HIPAA is the US Health Insurance Portability and Accountability Act that protects the privacy of individually identifiable health information.)
That's not stopping a pack of startups as well as some established vendors with new tools from trying to shake things up (Table 1). Within the next year or two we'll know whether this effort will pay off.
Aiming for a revolution
Most pharma and biotech companies are not focused on the Internet as the cure for their clinical trial problems. Instead, they are concentrating on improving their relationships with the doctors who work on the trials and the patients their products are developed for. Sanofi-Aventis, for example, tries to "make our [clinical trial] sites see that we are in it for the long haul, and that we are invested in these patients," Goller says. That means giving patients something back, such as information about trial results. Brian York, director of feasibility and patient recruitment at Amgen (Thousand Oaks, CA, USA), says his company is focusing on education and training around patient screening tools and consent forms.
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But several new ventures are attempting to build businesses by pushing the envelope when it comes to clinical information. PatientsLikeMe (Cambridge, MA, USA; http://www.patientslikeme.com/) has one of the most radical approaches. In this online community, patients share details of their health with other members or, depending on their preferences, with anyone on the Internet. Two of this site's founders are brothers—Ben and Jamie Heywood—who were inspired to found the company by a third brother's battle with, and eventual death from, amyotrophic lateral sclerosis (ALS). PatientsLikeMe has over a dozen communities around specific diseases such as multiple sclerosis (MS), ALS, AIDS and fibromyalgia. Their goal is to spawn "a new system of medicine by patients for patients".
Besides a typical privacy policy, PatientsLikeMe has an "openness philosophy" that distinguishes it. "When you let crowds access the data does that change the game? History says yes," says Jamie Heywood, chairman of the company.
Web 2.0 has already produced some surprises that are relevant for clinical trials. For one thing, although surveys indicate privacy is a hot button issue for healthy people1, that isn't always the case for patients facing a life-threatening illness. On PatientsLikeMe, the data are all kept anonymous and people are encouraged to use an alias, but they can add information that identifies them, like photos.
The site has more than 40,000 members, and the company reports that about half of those have recently visited the site. Patients are not required to input data to access the site, and its largest community is patients with MS, with more than 13,000 members.
The group is upfront that their business model is selling aggregated anonymous data to pharmaceutical, healthcare and other companies. Members can find other patients with disease progression similar to their own and participate in a community that discusses and shares the latest breaking information on their condition and any new treatments that might improve care (Fig. 1). The ability to join a community, give each other support, share insights about their disease and its treatment, see how others with the same disease are doing, and learn about clinical trials is enabled by the web platform. In addition to several nonprofit groups, PatientsLikeMe has partnerships with pharmaceutical companies Avanir Pharmaceutical (Aliso Viejo, CA, USA), Novartis (Basel) and UCB (Brussels).
Novartis, Avanir and other groups have used the site to recruit individuals as subjects for studies. These partners can create pages on the site with links to online prescreeners that determine whether someone is likely to be eligible or not. Although data on exactly how many patients have been recruited through PatientsLikeMe are confidential, Novartis reportedly accelerated an MS trial by several months using the site2.
UCB has a different goal. The company wants to learn more about the natural course of epilepsy, which is one of its key indication areas. "We are committed to learning as much as we can about epilepsy," says Jouko Isojarvi, senior medical director, central nervous system, UCB. "Although it is a challenge to approach this kind of new information, we think that because this [site] is patient-to-patient they may be more open about the kind of information they share." The company will develop surveys and other tools to glean information from the online community.
A new research model?
PatientsLikeMe and its collaborators, including some patients, are also doing their own nontraditional research by collecting and analyzing data on the site. For example, the group has 
3,700 ALS patients, of which more than 400 have taken lithium at some point. When preliminary data came out in early 2008 suggesting lithium might be a useful treatment for this disease, PatientsLikeMe was able to immediately start collecting data from members about the drug's effects and graph it on the site. In a post on the site dated March 2008, Jamie Heywood writes, "...we will run the first real-time, real-world, open and nonblinded, patient-driven trial. We believe we will have the power, within months, to begin answering the question of how much lithium modifies the progression of ALS." This analysis will include data on more patients than any published study of the drug to date. That paper hasn't yet appeared, and Heywood says they are still crunching the numbers.
PatientsLikeMe has recently partnered with another innovative startup, personal genomics company 23andMe (Mountain View, CA, USA; http://www.23andme.com/) in a bold effort to recruit 10,000 people with Parkinson's for a study (Box 2, Fig. 3). 23andMe uses Illumina's Human Hap 550+ BeadChips to read more than 550,000 single nucleotide polymorphisms (SNPs) across a customer's genome. The company then provides analysis regarding what is known about the association of those SNPs with a person's risk of certain diseases.
As part of the collaboration, in July, PatientsLikeMe gave its Parkinson's community tools already being used by its ALS community to store their genotypes. "People were starting to upload their genomes to the site," Heywood says. "We wanted to be able to do something with that data." That data are augmented with self-reported phenotypic data. Linda Avey, cofounder of 23andMe, says the company will look at how factors like ethnicity and environment affect disease risk and treatments.
"Both groups think the current research paradigm is not serving patients and is inefficient. No one has figured out the right model yet," says Heywood. "With Parkinson's we will come up with a new system." Patients will also have a say in what research is done, and earlier and broader access to results. Avey says, "Once you build a community of patients, there is so much more that you can do and that's what the research community hasn't done. This is not about getting a publication or a grant, it's about how do we make progress against these diseases."
About the same time they inked this deal, 23andMe launched an entire new research environment (23andWe), described as "a do-it-yourself revolution in disease research." Patients can form their own 23andMe communities, and 23andMe scientists and collaborators will conduct research within any community that grows big enough—reaching at least 1,000 patients. Patients can participate in research by signing up for a community and buying either the $99 "Research Edition" of the company's genotyping service, or the whole package at the regular $399 price. Patients can also become "research captains" by helping the company recruit more community members. Top recruiters will get the chance to speak to the research team about what research is done and how.
Ten disease areas have been started, including migraines, severe food allergies, celiac disease and testicular cancer. The project was launched in early July and as Nature Biotechnology went to press, migraines seemed to be leading the race with just over 140 patients signed up. Interestingly, 23andMe is going after some of the same communities as PatientsLikeMe, including MS and ALS. "Obviously, they are trying to grow their online communities," Heywood says.
Although it's an intriguing model, some question how easy it will be to verify the data. People may be mistaken, misinformed or even purposefully submitting someone else's data for one reason or another. There are also questions as to self-reporting bias—the tendency of people not to report their symptoms objectively, particularly if they are influenced by other patients. But perhaps 23andMe's greatest challenge is to show that genotyping research is relevant to clinical practice. "We have the best model to show the value of SNPs," says Avey.
Another leading community site is DiabetesConnect, which was created by Alliance Health (Salt Lake City, UT, USA), a healthcare marketing firm. Here patients can share information and get what is now called "information therapy"—articles, videos and podcasts about wellness and various conditions and how to manage them. They can also find out about clinical trials.
The director of client services, Joe D'Alessandro, says that the core of Alliance Health's business is generating leads for medical products companies. The company recently branched out into clinical trial recruitment and is "meeting customer's goals," he says, after netting more than 50,000 registered members. "About 20% of the members are responsible for 80% of the activity on the site," he says. That ratio is likely to be a crucial one. If patients are only visiting a site briefly, and then never returning, it will be hard to keep a flow of trial recruits coming.
Happy with the site's progress, the company has launched a similar sleep disorders site and plans to launch several more.
Docs too
Patients are not the only group served by social networking sites. Sites like ozmosis (http://www.ozmosis.com/) and Sermo (Cambridge, MA; http://www.sermo.com/) have communities exclusively for physicians, who join the site to trade insights, ask questions and set up networking groups. Sermo has 110,000 physicians signed up. So far they've logged more than 40,000 discussions and left more than 3 million comments. The company makes money by selling information gleaned from the community and selling access to its doctors to government, academic, finance and healthcare organizations.
Sermo also supports clinical trials in several ways. Using its "Panels Express" service, 10 to 20 physicians with specific areas of expertise can be recruited within as little as a day. Sermo reports that all the physicians in its database have been credentialed and authenticated, and that they span 68 specialties and all 50 states. Physicians can be recruited to participate in protocol design review, or discussions about ethics, biostatistics and adaptive trials. The company can also do surveys for site selection and feasibility studies.
Sermo has 50 clients and deals with "ten of the top twelve pharmaceutical companies," according to Pam Randhawa, vice president of strategic development at Sermo. "We have also done work with the FDA [US Food and Drug Administration] and with the CDC [US Centers for Disease Control (Atlanta, GA, USA)] on influenza." Those deals cover a range of activities. The company has done at least two protocol design reviews so far. Because it's all online, customizable and the physicians are active in the community, "we can help companies get feedback upfront," Randhawa says. "In some cases, you could save as much as six months by using our service," she claims.
Taking a lesson from Detroit
iGuard (Princeton, NJ, USA) takes a novel approach. Before founding the company, CEO Hugo Stephenson spent several years running phase 3b and phase 4 studies for the giant contract research organization Quintiles Transnational (Research Triangle Park, NC, USA). As drug safety concerns became more pronounced, he realized that the current adverse event monitoring systems were inadequate. "To do safety studies, you have to recruit doctors who have patients," he says. "I'd be lucky to get 3 out of 100 doctors that I asked, and 50% of those recruited drop out within a year." Stephenson wrote a white paper outlining a more efficient system. He says Quintiles management read the paper and said, "Let's do it."
Stephenson's approach is modeled after what US carmakers do. "You can drive a car around a test track 10,000 times, but until you are driving it in the snow, up a steep road, with four kids in the back and a trunk full of luggage, you don't know how it will operate in those conditions," he says. Drugmakers have the same problem because their products are tested in homogenous populations then released into the real world where they are used under a much broader range of conditions.
Carmakers solved their problem by having customers register their vehicles and then collecting data during regular maintenance visits. This way, the carmaker is the first to know if a particular model has a defect. To mimic that system, Stephenson developed iGuard—a medication monitoring service for patients.
The company advertises its free service through a variety of "channel partners," such as credit rating sites and pharmacies. "We don't focus just on health sites," Stephenson says. "We go wherever there are lots of people." In the course of their regular business activities, these partners ask their customers if they would like to enroll in a medication monitoring service. To join, patients fill out a simple form listing the medications they take, their age, sex, race, the medical problems they have, and an e-mail address.
From that point on, the system becomes high tech. At the site, patients can add information to their online profile, share feedback about their own response to medications and request that their doctors be copied on certain types of alerts. iGuard not only notifies members about safety alerts concerning their medications, it also screens for drug-drug and drug-disease interactions. Patients learn what certain medications are being used for, what common side effects are, how effective the drug seems to be and what people "wish they were told" before starting a medication.
Patients like the service. During a recent recall of digoxin pills that contained twice the required dose, one iGuard patient commented that when she went to return her medication, she found that her pharmacist didn't even know her pills had been recalled. If iGuard hadn't alerted her, she might have continued taking the too strong dose, Stephenson says.
Launched in October of 2007, iGuard already has 1.7 million members and is adding about 30,000 patients per week. The company's primary message is "Are you taking a chronic medication and if so are you interested in getting safety and recall information?" Stephenson admits that since 200 million patients are using prescription drugs in the United States, recruiting more patients will be a priority for a while. Even so, iGuard has enough patients to get busy on the profit-making side of its business model. "Our business is identifying patients for clinical research projects," he says.
The company reports that as of the end of August, iGuard had recruited more than 2,500 patients for more than 60 cross-sectional and prospective trials. iGuard is working on three new research protocols a week, and these cover a range of study types, including safety, drug response and observational studies (e.g., determining the natural history of certain types of conditions).
The company claims iGuard can accelerate study timelines by 4–6 months. Stephenson describes one sponsor whose drug was only working in a subset of patients. "[Instead of] spending $10 to $15 million on a trial, they used iGuard to reach out to 400 patients who had responded to the drug and 400 who had failed." Those patients underwent genetic testing as part of the study, which they volunteered for, "and the company got the data it needed," Stephenson says.
"iGuard has a robust community and people are trusting it with a lot of intimate and private information," says Mark Uehling, founder and editor of clinical trials news site ClinPage (Lincoln, MA, USA). "That's a true community and one that demonstrates public interest in research."
Matchmakers
Many of the new sites are primarily matchmakers that connect patients and researchers recruiting for clinical trials. Patients can already search ClinicalTrials.gov (http://www.clinicaltrials.gov/), the site where the US government directs drug companies and other organizations to post their ongoing trials (Box 3). New platforms are trying to make that process quicker, easier and more efficient, so patients don't have to read through the descriptions of hundreds of trials they aren't eligible for. Recruiters search through patients who have elected to share their diagnosis, and perhaps more information, either anonymously or directly.
The matchmaker model failed the first time around, when pioneer Veritas Medicine (Cambridge, MA, USA), which launched in 1999, folded last year. Veritas began with online recruitment using the matchmaker model, but this didn't go as well as planned; the company changed its strategy, but was ultimately unable to keep investors interested.
The new generation of online recruitment startups says things are different now. "Veritas was too early to the market," says Jean-Luc Neptune, CEO of Healogica (New York; http://www.healogica.com/), one of the companies reinventing this approach. "The Internet has evolved significantly since the late 1990s and early 2000." Neptune should know. Veritas cofounder Josh Schultz sits on Healogica's board. Sharib Khan, CEO of TrialX (New York; http://www.trialx.com/), one of Healogica's competitors, agrees with Neptune. "Eighty percent of people in America who are online are now searching for health information," he says. "Clinical trial information is one of the top searches."
Good prescreening tools for patient selection are key. Of the patients who seek out trials, many are not qualified for the ones they apply to. That wastes time and can be demoralizing. Trials have also gotten increasingly complex; the more sophisticated screening tools use branching where the next question depends on the patient's previous answer. It also helps to be able to divert patients quickly away from trials they aren't eligible for, to those they are.
One problem with aggregating clinical trials is that trial descriptions are written by different people who don't always use the same terminology. Healogica has artificial intelligence software that standardizes those listings, using natural language processing. That means patients don't have to understand things like specific ranking scales, they just describe their status in their profile. The platform includes proprietary search software that lets them identify the narrowest set of questions you can ask someone to determine if they are eligible for a trial, according to Neptune. "By answering about ten questions in less than a minute, we can reduce the number of trials a patient retrieves from several thousand to a handful," he says. Tapping into the cell phone software boom, Healogica now has an application that lets patients use the company's tools from their iPhone.
Like Healogica, TrialX is trying to make it easier for patients and researchers to find each other. Visitors can search the site's database and, if they want, ask for follow-up e-mail updates as new trials are added that fit their search criteria. TrialX is also one of the first companies that connects to a patient's personal health record (PHR)—online records that patients set up themselves—to help them match up with trials. The company has arrangements with the two other pioneers in this field, Microsoft (HealthVault; Box 4) and Google (GoogleHealth). Patients can connect their PHR to the TrialX software, which will pull relevant information for a clinical trial search.
Another entry into TrialX is Twitter, the social networking site that allows people to broadcast messages of 140 words or less. Patients send a "tweet" to @trialX, preceeded by "CT" describing the type of clinical trials they are seeking. "If you say, 'I am 35 years old, have multiple sclerosis, and live in New York,' we can tweet you back a tiny link that brings you to a list of trials," says cofounder Sharib Khan. TrialX has also automated many steps for patients: a single click generates a message telling an investigator the patient is interested in the trial.
TrialX just made an agreement with CenterWatch (http://www.centerwatch.com/), one of the world's largest online databases of active clinical trials. The deal gives TrialX access to more clinical trials data while CenterWatch gets plugged into social media, and investigators who use its service have a new source of patients. Khan says his company also has plans for an upcoming iPhone application (Fig. 2).
Advocacy groups' advantage
Although some people seem to tolerate, if not enjoy, posting data about their health online, many are squeamish about sharing any personal information on the web. These patients are unlikely to be tweeting about the kind of trials they are looking for or chatting in online forums about their disease.
Private Access (Irvine, CA, USA) CEO Robert Shelton knows about this first hand, as he is also the chairman of the advocacy group Knowledge, Support & Action. The group serves individuals who have one or more additional X or Y chromosomes, such as Shelton's son, who was prenatally diagnosed with Klinefelter Syndrome. The group uses that name because members did not want to receive mail stamped with the phrase "Klinefelter Syndrome Association."
Some patients with Klinefelter Syndrome don't even tell family members or their primary care physician about their condition, Shelton says, "and everyone has certain information they want to keep private." This concern has also led to a proliferation of forms and legislation aimed at guarding privacy. Different states, hospitals and providers may have different requirements around preserving privacy. In President Barack Obama's health information technology stimulus package, "there are more than 50 pages about privacy," Shelton says.
The cornerstone of Private Access's business is Privacy Layer, a program that secures data but allows the owner of that data to make them accessible to specific individuals on a case-by-case basis. This subtle but important twist of the social networking model makes certain that patients have control of their data and can learn as much as they want about someone before they bare it to an individual, let alone to a large group.
Researchers provide information about who they are, where they are based and the type of trial they are doing. Once they are authenticated and approved to use the system, they can browse among the registered patients, some of whom will remain anonymous and others who will have chosen to be identified. A researcher can send an introductory e-mail to patients who appear to be eligible for their trial. Even as they reveal more and more data to confirm that they are indeed eligible, patients can choose to stay anonymous or to share their identity. Besides this layered system for connecting researchers and patients, the software comes with multiple layers of security and an audit log that tracks activity.
An intriguing aspect to the service is how it relies on "trusted intermediaries" and leverages Private Access's partnership with the Genetic Alliance (Washington, DC), a non-profit health advocacy group that represents over 1,000 disease advocacy groups and more than 150 million people. Shelton believes that patients are more likely to use the service if it is recommended by people they know and trust. Each advocacy group will have a chance to review and test the service. If they like it, they can promote it to their members.
When members set about enrolling, they'll be able to choose one of several "intermediaries," or guides, to step them through a detailed questionnaire that gathers the data needed to help them find trials. A photo of each intermediary guide appears on the screen. If the patient has registered with Private Access as a member of an advocacy group, a leader of that group may become their guide.
Genetic Alliance's president and CEO Sharon Terry guides pseudoxanthoma elasticum (PXE) patients. Terry also chairs PXE International, an advocacy group for those with this rare genetic disease that affects elastic tissue. She and her husband Patrick founded that group in 1995, after discovering that both her children suffer from PXE.
"Having someone you trust in front of you is part of the equation," says Shelton. "The advocacy group leaders can tell their members, 'I think this is something you should look at.'" Leaders of these groups, such as Shelton himself, often know a great deal about these diseases. "If you look on ClinicalTrials.gov you'll find three trials for the condition my son has," Shelton says, "But I'll know about ten to fifteen such trials."
Private Access is still evolving its business model. The company recently signed a nonexclusive collaboration with Pfizer (New York) and is in discussions with leading trial recruitment firms and contract research organizations. Shelton claims that his company will drop the cost of recruitment "by an order of magnitude and drastically cut the time it takes." In July 2009, the company rolled out the first pilot service to the Knowledge, Support & Action community. By the end of August, 45 out of 100 invited members of the community had enrolled. Once the pilot is completed and Private Access expands into other disease groups, Shelton predicts the company will rapidly expand. "We will have thousands of users in a few months, hundreds of thousands in a year, and million in a couple of years," he says.
Having a connection to the advocacy community could be a big advantage. "If someone comes out with an interesting drug, you don't hear it in a tweet, you hear it from an advocacy group," says Nextrials' Rogers. "Powerful resources are being put into these advocacy sites."
The Juvenile Diabetes Research Foundation (JDRF) recently launched Clinical Trials Connection website (https://trials.jdrf.org/patient/) for type 1 diabetics. Built by VisionTree (San Diego), the site helps patients sort through clinical trials based on location and the types of patients being sought. Members can save 'favorite' trials, compare those and receive updates about new trials they may be eligible for.
JDRF already has a vital social networking site for type 1 diabetics (http://www.Juvenation.org/), which has 6,000 members. The organization also promoted the new clinical trials site aggressively by running a special "What does hope look like?" campaign on cable TV and elsewhere.
Over 5,000 patients preregistered for Clinical Trials Connection, and since its launch in July, an average of 500 people have been signing up each day, according to VisionTree. "On the first day we went live, I already got two e-mails from industry partners saying they had received inquiries they would not have gotten otherwise," says Paul Strumph, chief medical officer & vice president, medical affairs at JDRF.
Inspire (McLean, VA) (http://www.inspire.com/) is a site that is already recruiting patients for a range of trials, thanks to multiple communities. The site launched in 2005 and uniquely builds communities in partnership with advocacy groups. Its biggest memberships are around weight loss, support for premature infants and lung cancer. Confidentiality agreements don't allow the site to divulge numbers, but a spokesperson says that in terms of recruitment for clinical trials, "we have been pleased so far, and in one example we reached a sponsor's goals eight months [sooner] than the time allotted." Patients, too, they say, like the system.
Partnerships with advocacy groups thus seem quite promising, but success for websites devoted to patient recruitment is likely to rest on the same things all sites live and die by—traffic and stickiness. Companies need enough of the right kind of patients coming to their site, and coming back again and again.
Critical junctures
Despite all the activity in this sector, few people outside of social media are pointing to it as the promised land, yet. There is a broadly accepted view that someday technology will deliver a huge payoff: the ability to integrate and analyze data across the entire healthcare continuum, from basic research through clinical trials and patient care. In the short term, however, experts see a couple of key spots where smart use of technology could be pivotal. "I think the most promising tool is mining electronic health records," says Rogers. "That way you could look for the sites that have enough patients that you want to include." Having successful sites—doctor's offices or clinics that enroll lots of patients—is the traditional magic ingredient for a successful trial.
Rogers says he's only aware of two companies that can do that now: Greenway Medical Technology (Carrollton, GA, USA) and Cerner Corporation (Kansas City, MO, USA). Greenway spans mostly smaller community clinics, whereas Cerner has more hospital settings. This is a good start, but Rogers thinks the next big step will be for a company like his to be able to look across their much bigger networks of sites. The software for that doesn't exist yet, but when it does, he says it will be "evolutionary." One complication is privacy, which is "always huge," Rogers says. Most hospitals can mine electronic health records (EHRs) without breaking the law as long as they avoid using data that could identify the patient. Different institutions, however, have different regulations about that.
For EHR mining to become really big, many more hospitals and doctors' offices need to go to electronic record keeping. So far, adoption in the United States is poor, with only about 28% of providers adopting the electronic form, but there is hope that the government's $20 billion health information technology stimulus package, and the various incentives and penalties it calls for, will help EHRs spread. In countries like The Netherlands and New Zealand, meanwhile, almost all the providers are already wired.
ClinPage's Uehling also sees hope around the integration of electronic medical records and the electronic data capture (EDC) software used to collect data during trials. "That is potentially revolutionary, and it is much farther along than most people know," he says. "The larger EDC companies aren't there yet, but the smaller ones are."
When EDC and EHR systems can speak to each other, doctors and their staff don't have to learn new systems to participate in a trial. "That really speeds up their work and eliminates some of the regulatory burden," Uehling says. Investigator attrition is, after all, at the heart of the problem. "If some of these sites that are enrolling one patient could start enrolling six, that's huge," he says.
Currently, there are subsets of EDC and EHR programs that can connect. "What we need is complete interoperability between the two types of systems," Uehling says.
Meanwhile, if more members of the public set up PHRs, that could also mean more business for companies that connect to PHRs. The barrier here seems to be twofold: it can be costly and difficult to actually get your data into a PHR, and the public is still largely mistrustful. Surveys show that the majority of Americans think PHRs are a good idea, yet don't trust them to be secure. "Consumer demand for PHRs and online health services will take off when consumers trust that personal information will be protected," Markle Foundation (New York) president Zoë Baird is quoted as saying in a recent press release.
Plenty of room for progress clearly exists. In the meantime, the flurry of social networking sites for patients will likely keep expanding. "It's the hot thing and nobody wants to be left behind," says Jodi Andrews of ProTrials (Mountain View, CA, USA). Hopefully, the ride won't be too bumpy and some of these new products will help advance research and accelerate the development of improved treatments.
