Disclosing your data helps improve treatment and opens up new opportunities for research. Welcome to the fast-growing world of participatory medicine.
May 14, 2014
Interview of Peter Elbaek Petersen, director of Sundhed.dk
Sundhed is an enormous project. What were the biggest challenges you met: the mass of data or the gathering of information on a national scale?
The biggest challenge was to get individual organisations to accept the loss of
identity experienced by joining a portal
with a strong brand – this was especially tough for the first movers that had already launched projects.
It was also a challenge to build an organization and a network of contributors that could ensure deliverables.
How did Danish people receive this platform? Did people express fear about the loss of privacy? How did you communicate on such a change?
The Danes have embraced the portal. In the first 10 years, there has been a
steady increase in traffic. In 2010, a new version of the access solution – now
shared with the banking sector – led to an increase in the use of the
personalized part of the portal.
Danes have shown a high level of trust in the general security solution for accessing personal information on public internet sites, as well as a high level of trust in public sector organisations – so there has been very limited fear expressed about the loss of privacy. This may become a bigger issue in years to come.
Original plans for large budgets to campaigns etc. never materialized. The portal is marketed through one or two smaller, annual campaigns aimed at citizens, in addition to a continuing communication effort aimed at health professionals to explain their potential use of the portal and to make them ambassadors with respect to citizens’ use.
How many people actually use Sundhed? Is this stat progressing?
Yes, we are seeing progress. In both October and November 2013, the portal monitored more than one million different?
visitors per month. This should be seen in relation to a total population of 5.6
Has it changed the way Denmark manages its healthcare system?
No, but it supports an existing system and offers new communication channels –
to replace meetings in person. The portal’s biggest influence on the system is
seen through its support offered for the patient’s active participation and
independence in prevention and treatment – by allowing self-monitoring for
patients with diabetes and by offering the patient support from other patients
in a similar situation.
Medicine has always been about data. More or less structured information – on symptoms, temperature, heart rate, medical records, test results, etc. – has been used by practitioners for centuries to diagnose ills and prescribe treatment. This age-old practice has exploded in the past ten years. Medical data has gone digital, growing exponentially and flowing endlessly. The phenomenon is opening up new opportunities for researchers and transforming the doctor-patient relationship.
Healthcare professionals are not always the ones collecting these vast amounts of data. A number of social media sites focused on diseases have cropped up, some of which were even created by patients themselves.
“The storage capacity and powerful calculation abilities of computers are completely revolutionising the way we do research,” says geneticist Jacques Fellay, laboratory director at the School of Life Sciences at the Swiss Federal Institute of Technology in Lausanne (EFPL). “Today, we can work with a virtually infinite amount of medical data from ‘real’ patients from a broad range of backgrounds. Until now, we had to study limited groups of people willing to participate in clinical trials.”
Healthcare professionals are not always the ones collecting these vast amounts of data. A number of social media sites focused on diseases have cropped up, some of which were even created by patients themselves. All the information they publish is compiled and can therefore be used to build a collective, documented knowledge base of chronic diseases that are sometimes rare and relatively unknown (see point 1 below).
Other types of data come from electronic patient files, a public service available in a number of countries, including Switzerland. Furthermore, biobanks are being set up worldwide by healthcare institutions to pool collections of biological samples.
However they do it, patients are sharing their personal data – on blood, tissue or results from clinical tests – voluntarily. A growing number of them have a desire to contribute to science. “This trend doesn’t necessarily mean that people trust research more today than they used to,” says Jacques Fellay. “Ten years ago, we simply didn’t have the technology to harvest and store such large amounts of data. If scientists explain their intentions to patients correctly, and if they can work together in an ethically sound environment, then participatory medicine has a bright future ahead. More importantly, it will open up extraordinary therapeutic prospects for a number of diseases.”
In September 2012, Italian Salvatore Iaconesi, who had been diagnosed with a brain tumour, decided to put all of his medical data online, inviting visitors to his website “La Cura” to help him find a cure. He received more than 500,000 responses offering advice, even from doctors. After his operation, he thanked the entire support community for “being there” for him.
Like Salvatore Iaconesi, thousands of people across the world now share their medical records on internet platforms designed specifically for this purpose, such as CureTogether and Carenity. One of the most popular is PatientsLikeMe, a social media site set up in the United States in 2005. People can register and create a profile with a username. This sort of Facebook for sick people has 250,000 members, 153 of whom are from Switzerland. Patients describe their symptoms and compare diagnoses and side effects.
What is the point of sharing such personal information online? The main reason is to find a cure for a disease. “We compile our members’ data into charts and tables, so they can compare themselves with other people suffering from the same disease, see what medications work best for them, learn about the side effects of different treatments or get advice about how to manage their symptoms,” explains Paul Wicks, VP of Innovation at PatientsLikeMe. Geneticist Jacques Fellay believes that “people also want to find purpose in the difficult experience they’re going through and make it useful for others.”
Patients take control
Patients now go online to find out more information about their health, taking on a whole new role in their care. No longer passive subjects dependent exclusively on their doctor’s expertise and recommendations, they seek information from other “informed patients”. This builds their confidence. “Patients often come in for a visit with pages printed from Wikipedia,” says Chin Eap, member of the Unit of Pharmacogenetics and Clinical Psychopharmacology at the Lausanne University Hospital (CHUV). “There are positive aspects of this change that benefit doctors. Patients pay closer attention to their symptoms and can describe them better.”
Some will go so far as changing the treatment prescribed by their doctor. For example, an American patient with multiple sclerosis found out on PatientsLikeMe that he was taking a smaller amount of one of his medications, Baclofen, than the other site users. “By increasing the prescribed dose, he gained one hour of mobility per day,” says Paul Wicks. Another patient cured her epilepsy by having a brain operation that she learned about on PatientsLikeMe.
“We compile our members’ data into charts and tables, so they can compare themselves with other people suffering from the same disease, see what medications work best for them, learn about the side effects of different treatments or get advice about how to manage their symptoms,” explains Paul Wicks, VP of Innovation at PatientsLikeMe.
Some science experts have expressed reservations about the genuine usefulness of this data shared online by patients. “The quality of the data depends on the person’s understanding of their own state of health, which may be flawed,” stresses Pierre Théraulaz, member of the Vaud Patient Claim Review Commission. “A person may not agree with their diagnosis or may not accurately report their symptoms, or they may exaggerate the side effects of a medication. There needs to be an outside expert opinion.”
Another cause for concern is the impact that the online sharing of such vast quantities of medical data will have on confidentiality. On PatientsLikeMe, people don’t think twice about using their real names, sharing pictures of themselves and indicating their home town. Participants in the Personal Genome Project actually have to sign a consent form that states that the data they provide could be stolen or decrypted. When someone shares information about their health online, they expose themselves to the risk that an employer might refuse to hire them or that an insurance company might not provide them coverage.
Patients also lose control over what is done with their data. PatientsLikeMe sells information about its members to pharmaceutical companies such as Novartis. CureTogether even allows pharmaceutical groups to send advertising to its members. “These online patient organisations have played a key role in developing participatory medicine, and their benefits are undeniable,” says Jacques Fellay. “But it is time to think about ways of guaranteeing protection for the individual.”
Data is also going digital at the individual level. Electronic records pool all of the information on an individual’s health, currently dispersed among numerous sources, and make this information available at any time from any device with internet connection. The purpose of electronic records is to reduce processing errors, provide faster care and avoid unnecessarily repeating tests.
Computerised medical records are already a reality in some Swiss cantons. Geneva was a pioneer of the movement that was deployed across the entire canton in May 2013. Patients who want their records computerised must file a request with a healthcare professional. As of January 2014, nearly 1,600 people had already made the switch. The file takes a few hours to create and is then connected with an insurance number, with some pre-existing information automatically inserted. Both doctors and patients can then view the records via an online platform (www.mondossiermedical.ch). “The patients decide who has access to what information,” says Adrien Bron, head of Geneva’s General Directorate for Healthcare (Direction générale de la santé).
Electronic records do not replace existing medical records. “Any information they contain is considered a bonus, but there is no guarantee that it is complete,” warns Adrien Bron. “Healthcare professionals are not required to include the information from their own records. The more electronic records are used, the more effective they will become, especially for primary care physicians or in caring for patients with a complex medical history.”
Electronic records do not replace existing medical records. “Any information they contain is considered a bonus, but there is no guarantee that it is complete,” warns Adrien Bron. “Healthcare professionals are not required to include the information from their own records.
Despite needed improvements, such as allowing patients to enter data themselves, the Geneva platform remains the most advanced of its kind in the country. Switzerland wants to encourage the creation of electronic records. A proposed federal law was drafted to define a legal framework, which could be passed in 2015. It would include certain incentives, namely financial. “The plan is not to create a federal platform, but to set up decentralised structures that can be limited to canton borders or extend beyond them,” says Daniel Dauwalder, spokesperson for the Swiss Federal Office of Public Health.
Other countries have taken things further. In Denmark, a nationwide platform was set up providing access to patients’ electronic records, medical information and information on the healthcare system. The website is called Sundhed, and it is a big success. Managing Director Morten Elbæk Petersen (read his interview atwww.invivomagazine.com) pointed out that, at the end of 2013, the site was recording more than one million unique visitors per month in a country with a population of just 5.6 million (interview below).
Ever bigger, ever more of them. Biobanks – repositories of biological samples (blood, tissue, urine) used in research – have been growing recently thanks to advances made in genomics. Also referred to as personalised medicine, this approach aims to treat each patient based on his or her specific genetic make-up. It is used to develop targeted treatments and prevent disease. The problem is that most of these genetic variations only concern a fraction of the population. To detect them, researchers have to study a large number of DNA samples. That is where biobanks come in.
In Lausanne, a unique project in Europe to create a systematic hospital biobank based on the participation of all patients was launched in early 2013. The Institutional Biobank of Lausanne (BIL) aims to stay a step ahead of the rapid advances in genomics research. Patients can donate a few millilitres of blood, which is then stored and used by researchers. “Of the 8,500 patients met prior to January, 7,500 agreed to contribute,” says Vincent Mooser, director of the BIL. “We inform participants if we discover a gene mutation that would increase their predisposition to a disease.” The only exceptions are diseases for which there is no treatment.
There are safeguards. “Under federal law on human research, we must obtain written consent if we want to use someone’s medical data.” And firms have to inform federal data protection officials when they harvest patient information. Each canton also has an ethics commission that monitors this research. However, there is no international framework.
“We have to prove to patients that they can trust us when they agree to participate by offering their samples and data,” says Jacques Fellay. “Researchers do this by showing their transparency and by keeping patients well-informed of their progress on
Other big biobanks have been set up throughout the world, such as the National Biobank of Korea, the paediatric biobank at the Children’s Hospital of Philadelphia and the UK Biobank. A number of smaller biobanks have also been created by hospitals for targeted research.
The enormous volume of digital data generated by individuals. Every day, it grows by 2.5 trillion data bytes, according to IBM.
In billions of dollars. The turnover of the Big Data market in 2014 (all fields combined), according to Transparency Market Research.
In billions of dollars. The potential savings to the American health system, thanks to Big Data applications, according to McKinsey.
André Charette was hospitalised in November 2012 and agreed to provide a sample of his blood for research.
André Charette did not think twice. The Institutional Biobank of Lausanne (BIL) asked him if he would agree to donate some of the blood taken during his operation to research. He accepted immediately. “If I can contribute to advances in research in one way or another, I’ll do it,” he says. “I also agreed to donate tissue samples.” This 42-year old father of two mainly hopes that advances in genomics will benefit future generations.
André Charette wants to be informed if any genetic abnormalities are detected in his DNA analysis. “My data is not completely anonymous, because researchers can trace them back to me,” he says. “But the BIL assured me that my genetic information would only be used for medical research. I trustingly signed the general consent.”
Patients can donate a few millilitres of blood, which is then stored and used by researchers. “Of the 8,500 patients met prior to January, 7,500 agreed to contribute,” says Vincent Mooser, director of the BIL.