San Francisco served as the host city for the 5th Annual Health 2.0 conference on 25–27 September 2011, which gathered more than 1,500 people interested and actively involved in innovation in health care through information technology. I had the privilege to attend this conference and in a report published on ecancermedicalscience I shared the highlights of the event: from new tools to redesign medical data; to synergistic interactions between web 2.0 tools and public health; to the use of the internet as a positive catalyst for behavioral change to improve health and lifestyle; to direct to consumer genetic testing that drive a new, community-driven approach to research and to electronic health records adoption and data liberation. Among the big names presenting at the conference were Thomas Goetz, chief editor of Wired,who recently published a book titled “The Decision Tree’, where he describes how to use health information technology tools to achieve better decisions in the new era of personalized medicine. Anne Wojcicki was another of one of the big names present this year in San Francisco. Anne is the cofounder and CEO of 23&me, one of the most successful direct to consumer (DTC) genetic testing companies. 23&me has been constantly expanding since it was founded in 2007, and is now not only a DTC-provider but also fostering collaborative research on the genetic causes of Parkinson’s disease and other neurodegenerative diseases.The main thread linking all of the initiatives presented at Health2.0 is a participatory approach to health that involves all stakeholders ‘who have a hand in healthcare’. The participatory nature of Health 2.0 was highlighted by Lygeia Ricciardi, Senior Policy Adviser at the Office of the National Coordinator of Health IT (ONC), who defined Health 2.0 as ‘participatory health and healthcare for patients, consumers and caregivers, as well as more traditional members of the health team, as doctors, nurses, other providers working together collaboratively to improve care’. The concept of participation in health-care was also very visibly embodied by the work of Regina Holliday, artist and patient advocate. Regina was also the designated artist of the logo for this edition of the Health 2.0 conference (see picture), where she created a wonderful mural symbolizing the interwoven interactions between doctors, patients, organizations, and health care providers, which, in theory, could lead to a dramatically improved health care.
‘Information is a source of learning. But unless it is organized, processed, and available to the right people in a format for decision making, it is a burden, not a benefit’. This quote, usually attributed to William Pollard, an English Clergyman of the 19th century, could indeed be adapted to the plethora of information that can be found nowadays on the internet. In particular, it could be adapted to the kind of health information patients are seeking on the internet following a cancer diagnosis, or when they turn to the web looking for a second virtual opinion or for additional information to help them in a time of difficult decision-making. But, as Pollard aptly put it, unless it has been properly processed and organised, the information can become a burden for those patients. What does it mean to be ‘properly processed and organised?’ And what are the strategies that can be put in place to be sure it is? In order to answer this question, a pan-European survey was conducted by the Welsh cancer charity Tenovus under the auspices of the FP-7 funded Eurocancercoms project during the period September 2010–March 2011. It was designed to broaden public policy understanding of patients’ specific needs when seeking online cancer information, and aimed to identify gaps in the current online cancer information provision across Europe. The results are now published on the European Journal of Cancer in a paper that I co-authored, together with five recommendations to make online information a benefit, and not a burden, for those cancer patients who are turning to the web to look for an aid in decision-making.
More and more patients are turning to the internet to look for a second medical opinion, or for an experimental drug being tested in clinical studies that could help them if they fail standard drug treatment for their condition. In the past it was usually their specialists who would recommend participation in a clinical trial, or refer the patients to a research hospital nearby where clinical studies were conducted. With the advent of web 2.0 tools though it is becoming more and more common for the individual patients or their families to surf the internet looking for active, recruiting clinical trials that may suit them. In the US patients look up on ‘Clinicaltrials.gov‘ (the NIH-based website), while in Europe the clinical trials’ portal is the ‘EU clinical trials register‘ which was just launched this March. Such websites contain huge amount of information which is often difficult to access and understand for the average patient who is overwhelmed by the maze of information written in scientific and medical jargon. ‘Dory‘ will help the patient to get out that kind of impasse. Dory is an online interactive tool that asks the patients personalized questions and help them find the right clinical trial near them.I tried that myself, inserting “asthma” as a medical condition. I was then asked to enter my zipcode and how far I would be willing to travel to participate in a clinical study (options range from less than 5 miles to entire country, ie the US). I inserted a middle-way option of less than 50 miles and a zipcode of Marin County (north of San Francisco) and I retrieved 10 clinical trials, subdivided by early and late phase of development. The details of the study are displayed, with the relative mileage to drive and the approximate numbers of hours required, and the name and email of the principal investigator to contact to express interest in participation.
Dory is a start up based in the Bay Area that was awarded 10,000 $ to continue development as a semifinalist prize of the Developer Challenge at the Health 2.0 conference in San Francisco. The competition aims at fostering innovation for projects aimed at using public data for cancer prevention and control, and it is a joint initiative of the National Cancer Institute and America Competes Act. Ask Dory is one of the four semifinalists who are receiving each 10,000 $ plus targeted feedback to develop further their projects and will compete in a second round of the challenge with deadline in November, that will award two semifinalists and 20,000 $ each.
For now Dory is helping only patients based in the US (as it uses data derived from ClinicalTrials.gov), but hopefully other inventive and innovative people will take the model and develop it for a EU-based public, using EU-based data.
PS If you don’t remember, ‘Dory’ is the name of the fish that Nemo used to ask lots of questions, to which Dory cheerfully replied by singing: “Just keep swimming, just keep swimming…“