People have increasing opportunities to participate in genetic testing that can indicate their range of risk for developing a disease. Receiving these results does not appreciably drive up or diminish test recipients’ demand for potentially costly follow-up health services, according to a study performed by researchers at the National Institutes of Health and colleagues at other institutions.
Health Highlights is a biweekly summary of particularly interesting articles from credible sources of health and medical information that we follow & read. For a complete list of recommeded sources, see our links page.
- Safe Cookware | Mark’s Daily Apple
Mark Sisson considers cookware and the effects of different materials on health.
- Science as a Search Function | The Decision Tree
Thomas Goetz reports on a project between 23andMe, the Michael J. Fox Foundation and the Parkinsons Institute and Clinical Center to develop a Parkinson's Disease genetic database.
- Imagine someone had been managing your data, and then you looked. | e-Patients.net
e-Patient Dave describes the issues he experienced when he uploaded his personal health data into Google Health. Do you know what's in your medical record?
- Pallimed: A Hospice & Palliative Medicine Blog: Hospice Patients Feel Abandoned by Doctors
Dr. Christian Sinclair reviews eight reasons why contact breaks down between a physician and patient following hospice enrollment.
- 20 Simple Ways to Get Happy: State of Mind | Reader’s Digest
In these tough economic times, it can be challenging to keep a positive outlook. Reader's Digest offers 20 ways to take control of your mood and improve your health.
- Can a doctor sue a patient for a negative online review? | KevinMD.com
There are a number of online review sites where patients can write about their experiences with physicians. Kevin Pho writes about the negative aspects of these rating sites.
- New England Journal Of Medicine: Fewer Than 17% of Hospitals Have Adopted Electronic Medical Records | ThePatientReport.com
The PatientReport.com reports on a recent study on the use (or lack thereof) of electronic health records in hospitals.
Private Access, an Irvine, California-based company, is addressing the interwoven challenges of protecting consumers’ privacy and the accessibility to confidential medical records through the development of several web-based applications. Private Access enables patients to control privacy on their own terms. Its first application, which is scheduled to be released early this year, will help patients to more easily find and participate in clinical trials and research studies.
There is a lack of awareness regarding the availability of clinical trials as an option for patient therapy. According to the Education Network to Advance Cancer Clinical Trials (ENACCT), only 3% of patients participate in clinical trials, with even lower participation among minority populations. Trials are closing early due to low accrual and patients are losing out on quality treatment options. Progress toward a cure is being slowed. Similarly, a recent study found that 85% of cancer patents surveyed said that they did not participate in a trial because they were unaware that it was an option . According to a recent study sponsored by the Institute of Medicine, from a list of seven alternatives, the number one reason patients cited for having declined to participate in clinical trials in the past focuses on concern about the privacy of their personal information .
Private Access addresses all of these challenges head-on. The company offers an easy way for patients to find out about clinical trials and to more easily express interest in possibly participating. It focuses on their privacy concerns by giving patients a way to better manage who sees their information and for what purpose, making it possible, for example, for interested patients to make their information available only for specific kinds of research studies or only by a particular researcher. It also permits authorized researchers to more easily and cost-effectively locate and contact those patients interested in participating in clinical trials and research studies.
I had the opportunity recently to interview Robert Shelton, the founder and CEO of Private Access, and find out more about the company, its approach to privacy and access, and the benefits to patients and researchers.
Robert Shelton, thank you for taking the time to talk with me. What is Private Access and what is the vision of the company?
Private Access is of course a company. It is also a play on the words “privacy” and “access,” which most people tend to think of as being a “pick one or the other” choice, whereas we believe that both attributes can and must be achieved if we’re ever going to truly transform healthcare to function with less cost and greater efficiency. Therefore, at the crux of our business is enabling individuals to dynamically control who can and cannot access their personal information.
From day one, Private Access’ focus has been to create a privacy-aware architecture that will permit individuals to create highly granular privacy directives that will make it possible to have ‘privacy-enabled search.’ The technology we’ve built extends the current capabilities of Internet search to include the ability to search private information, such as personal medical records.
Clearly a consumer-centric, privacy management technology such as this has multiple applications, particularly with the increasing recognition of the critical importance of electronic health records and data liquidity. The niche we’ve elected to tackle first is the multi-billion dollar market for matching medical researchers with subjects for clinical trials. Using our technology, we will permit this to occur in a fraction of the time, and at about one-tenth the cost.
Here’s an easy way to think about the value proposition we offer. According to market research, recruitment of subjects takes an average of between 6 and 12 months to complete, and costs in the range of $1,800 per subject. We’re looking to reduce the time to locate qualified subjects to literally a few minutes, and to drop the price by as much as 90%.
What are the applications Private Access will be launching later this year? What are the benefits each application provides to patients and/or researchers?
Over the next few months, Private Access will launch its first products that allow researchers to use Internet search technology to find subjects who meet the criteria of particular research initiatives, all with the individuals’ express permission. Our first three applications are:
TrialsFinder™ supports the mission and efforts of disease affinity groups, social networks and online communities to help their members locate the most relevant clinical trials and research studies. Once an organization finds a particular trial in which they want their members to participate, TrialsFinder™ is used to create an “I’m Interested” button or widget that can be placed on the group’s website and in any electronic messages to its members, making it easy for individuals to volunteer for a particular trial, or research in general, literally with the click of a mouse.
PrivacyLayer™ is the consumer-centric platform that allows each individual to establish and manage his or her own personal privacy preferences before sharing any confidential information. Because it is consumer-facing, we’ve focused on making it easy to use and highly intuitive. We include encouraging stories authored by respected leaders for each condition we serve to assist individuals to determine what aspects of their confidential health information they want others to see and for what particular or general purposes. As an example, one person might want to express interest in a single study by a known researcher, whereas another may prefer to allow all researchers who are focusing on a particular condition see everything about her except for her personal contact information unless and until she provides her express consent. PrivacyLayer™ provides this opportunity to get precisely the level that the individual feels most comfortable given his or her particular circumstances.
RecruitSource™ is Private Access’ web-based search engine that allows researchers to find subjects for clinical trials in a matter of minutes. The researcher simply types in one or more search terms or concepts, and our system locates the potential subjects who meet these criteria and makes certain that the researcher has the right to see their data based on the subject’s privacy preferences. Assuming they do, information about these potential subjects is returned to the researcher in a “pseudo-anonymzed” form. Researchers incur no cost (and have unlimited time) to view, analyze and bookmark the pseudo-anonymized patient data, making it easier and cheaper to perform initial screening of potential subjects. The researcher can also create an alert for any search query, so that if a subject later enters the system who matches the researcher’s criteria, the system will automatically alert the researcher of this. When a researcher determines that he wants to make contact with a prospective subject, and upon receiving the potential subject’s contact information, the researcher pays a modest fee to Private Access.
As more and more personal health data is accessible online, privacy is a major concern of patients and health consumers. Can you talk more about PrivacyLayer and the methods Private Access employs to ensure privacy and confidentiality?
Absolutely. Dr. David Brailer, the first National Coordinator for Health Information Technology, was quoted in Health Affairs shortly after leaving office in 2007, as saying that “Privacy is the defining issuing in health information sharing …” . Just a few weeks ago, in one of his final speeches before leaving office, U.S. Department of Health and Human Services Secretary Michael Leavitt echoed Dr. Brailer’s observation, commenting that “Finding the balance between increased access to information and privacy is very important … Each consumer should be able to choose products and services that best fit their health needs and privacy preferences … “ .
From our perspective, these are insightful observations. Clearly, patients want to share their health data with far less hassle. But they want the information shared with the entities and individuals they want to have it, or that need it for their optimal care. They don’t want it shared with people who don’t. When patients feel that systems place their personal data at risk of getting into the hands of the people they don’t want to have access to the personal data, or that might hurt them as a result of what it contains, their concerns about health data exchange in general increase.
So as an industry, when we’re able to assure patients that their data will be protected and be shared in accordance with their wishes — something we call Creating an environment of trust™ — the more consumers will share with their trusted network.
That’s where our tools come in.
Private Access helps to create an environment of trust based on helping the individual to express in privacy directives who he or she wishes to have access to his or her information. The genesis for PrivacyLayer™ is to create a perfect balance between privacy and access — a balance that is determined by the patient, and that may change over time as their needs or circumstances change. With our technology, ‘opt in’ or ‘opt out’ are replaced by much more granular, we believe truly useful settings that permit the patient’s care to be provided in a faster, higher quality and less costly manner.
Private Access was born out of the belief that a consumer-centric technology can be used to more effectively get over the privacy hurdle than trying to force a “one-size fits all” solution for an issue that is so controversial and for which there is such variability in perspectives. As we’ve discussed, our first applications are focused on clinical trials recruitment. But we foresee PrivacyLayer™ and future applications that will be built on that platform for managing privacy preferences will extend well beyond this, focusing on numerous other areas of health data sharing.
To take a simple example, a patient might want their doctor or a researcher looking into a medical breakthrough for their disease to know that they have or are at risk of having a particular condition, but to not want their employer to know.
This is rational, and we absolutely can create a technology that will make this possible. In fact, we have created just such a technology. We refer to this as ‘the perfect balance between privacy and access.’ It is precisely what we seek to empower consumers to create for themselves with introduction of PrivacyLayer™.
Upon the issuance of our core patents in late 2006, Private Access’ technology team began developing leading-edge Internet search tools that create ‘privacy-enabled search’ so that individuals, researchers, providers and others could share confidential medical information while allowing individuals to maintain control over who can access their information and for what purpose.
Each of us believes that creating trusting relationships based on confidentiality, security and ease of use, are critical to creating data liquidity for health care information; and that, in turn, when these are present, this will improve care and reduce costs. So in a way, where some may view privacy as being an impediment to getting to the goals we all share for technologies that will assist us to have a long and healthy life and a vibrant economy, we view privacy-enabling of technology as being a key enabler to these goals.
Some physicians don’t encourage their patients to get into clinical trials because they view enrollment as too much trouble. How can Private Access help?
Although research shows that a health care provider’s recommendation has an enormous impact on a patient’s decision to participate in a clinical trial, data also suggests that provider awareness of clinical trials is limited.
A few years ago, a survey focusing on oncology practices found that the largest barriers cited by physicians to successfully recruiting patients for clinical trials relate to time, staff, and resources. Clinical trials involve more intensive collection and filing of patient information and data. In addition to the extra paperwork, sometimes staff may need additional training to complete necessary forms. Thus, when asked what would help them enroll patients, respondents to the survey gave high marks to reduced paperwork, assured reimbursement of patient care costs, and more data management help.
Our technology, which entails zero hardware or software investment by a provider, can help reduce this burden on the provider and his or her staff. The workflow our system enables makes it much easier for a provider to talk about clinical research with his or her patients, as well as to identify the patients that meet a research protocol as studies become available in the future in which patients have previously expressed interest.
Beyond this, and later in 2009, Private Access’ technology will be leveraged to handle medical records requests and fulfillment based on each patient’s privacy preferences in PrivacyLayer™.
Private Access’ solutions are not designed to be a ‘store’ for medical information, and thus it would be erroneous to compare what we are doing to either an EHR or a PHR. Instead, the solutions we are building create a ‘switch’ that permits the patient to efficiently express who they want to receive copies of their information, both in advance directives and dynamic electronic consent.
Many providers are concerned about inadvertently violating HIPAA requirements, keeping requisite records to prove they received the proper patient authorization for the release of records, and other details that take time and attention away from the practice of medicine. Our solutions are designed to reduce this confusion and uncertainty so that things can happen faster, with less expense and the prospect for new revenues to the practice.
- Comis et al. A Quantitative Survey of Public Attitudes Towards Cancer Clinical Trials: A Harris Survey Report. Coalition of National Cancer Cooperative Groups. Accessed 2009 Jan 15.
- “Concerns about Privacy are a Substantial Barrier to Medical Research,” Harris Interactive Healthcare Newsletter (Volume 8, Issue 1), 2008 Jan 18. Accessed 2009 Jan 19.
- Brailer DJ. Health information technology is a vehicle, not a destination: a conversation with David J. Brailer. Interview by Arnold Milstein. Health Aff (Millwood). 2007 Mar-Apr;26(2):w236-41. Epub 2007 Feb 15.
- Secretary Leavitt Announces New Principles, Tools to Protect Privacy, Encourage More Effective Use of Patient Information to Improve Care. U.S. Department of Health & Human Serivces press release. 2008 Dec 15.