Participatory Medicine: ACOR and the Liddy Shriver Sarcoma Initiative

Participatory Medicine and e-Patients

We believe that the report, "e-Patients: How they can help us heal healthcare," is very important. Anyone interested in understanding what is behind some of the important changes in and some of the emerging possibilities for the healthcare landscape in the United States (and quite possibly in many countries around the globe) should read it if they haven't already done so. The report was begun by the pioneering physician, author, and researcher Tom Ferguson, M.D. and was recently completed by a group of his colleagues after his untimely death in 2006. The group is called "The e-Patient Scholars Editorial Team" and consists of Meredith Dreiss, Susannah Fox, Gilles Frydman, Joe and Terry Graedon, Alan and Cheryl Greene, John Grohol, Dan Hoch, and Charlie and Connie Smith. An increasing number of patients, caregivers, and survivors are empowering themselves. The report discusses some of the potential benefits of participatory medicine and identifies hurdles that are in the way of achieving those benefits.

What Are e-Patients?

The e-Patient Scholars Editorial Team endorses the definition of e-Patient given in Wikipedia. It is repeated here for the convenience of the reader:

e-Patients (also known as Internet Patient, or Internet-savvy Patient) represent the new breed of informed health consumers, using the Internet to gather information about a medical condition of particular interest to them. The term encompasses both those who seek online guidance for their own ailments and the friends and family members (e-Caregivers) who go online on their behalf. e-Patients report two effects of their online health research: better health information and services, and different (but not always better) relationships with their doctors. Based on the current state of knowledge on the impact of e-Patients on the healthcare system and the quality of care received:

  • Since the advent of the Internet many clinicians have underestimated the benefits and overestimated the risks of online health resources for patients.
  • Medical online support groups have become an important healthcare resource.
  • The net friendliness of clinicians and provider organizations—as rated by the e-patients they serve—is becoming an important new aspect of healthcare quality.
  • This is one the most important cultural medical revolution of the past century, mediated and driven by technology.
  • The impact of the e-Patient cannot be fully understood and appreciated in the context of pre-internet medical constructs.
  • Research must combine expertise from specialties that are not used to work together.

A related definition for "Participatory Medicine" can be found on the Seven Words of Wisdom blog:

"The presence of e-Patients has already caused a shift in the traditional, paternalistic doctor-patient relationship toward one that may best be described as participatory. In that spirit, we propose a new model of medical care to be called Participatory Medicine. Participatory Medicine is based on the development of a team that includes the patient, patient groups, the entire care team, and clinical researchers in a collaborative relationship of mutual respect. It requires equal access to all the data and equal rights in the decision making process, based on all the data collected, the information gathered and collective wisdom. It is based on the understanding that treating an individual patient with optimal care is often beyond any single individual ability. All sides must take their role seriously and accept the responsibilities of that role. Patients must significantly raise their functional level of health literacy and demand respectful treatment from providers. They should be able to comprehend enough of the medical picture to properly describe their daily experiences as recipients of medical care."

The "e-Patients: How they can help us heal healthcare" report is available online both in PDF and wiki format. The e-Patient Scholars Editorial Team has given us permission to republish Dr. Ferguson's preface to the report consistent with the Creative Commons license. We selected the Preface because we thought it would whet the reader's appetite to examine the complete report.

Preface of the Report

In his groundbreaking work, Thomas Kuhn identified two contrasting types of scientific work.1 The first, normal science, involves the gradual accumulation of knowledge within a dominant professional paradigm that is still timely and effective.2 The discovery of the structure of DNA is one example of normal science: the investigators knew what they were looking for, knew the methods they would need to use, had faith and trust in their underlying paradigm, and immediately knew it when they found the answer.3 A healthy and vital professional paradigm can be a sort of unifying cultural DNA, helping members of a profession work together.

But there can be a dark side to professional paradigms as well. Since observations, approaches, and strategies that don't conform to the accepted tenets of the dominant paradigm are typically ignored, denied or explained away, an outdated paradigm can insulate a professional community from new developments that are "off the radar screen" of their customary ways of thinking. And the understandable professional impulse to defend and protect a valued paradigm can lead professionals to champion obsolete practices, to stifle needed change, and to make attempts at innovation-within the paradigm-unproductive.

Outdated professional paradigms thus sometimes persist far longer than they should. And so in times of rapid technological or cultural change, when it becomes increasingly clear that the dominant professional paradigm in its traditional form no longer serves the needs of the greater community, a second type of scientific work becomes necessary.

Disruptive science seeks to identify and understand the underlying limitations of the old paradigm, and to facilitate the development of a more suitable and sustainable new scientific worldview. And while the practitioners of normal science may keep their methods private and conceal their results until such time as it best serves their purpose, practitioners of disruptive science are typically more open and collaborative in their efforts, reaching out to a network of like-minded investigators, seeking their advice and inviting their collaboration. The shift from the Ptolemaic to the Copernican model of the solar system, as described by Kuhn,4 provides a valuable illustration of disruptive science.

Many of the insights in the chapters that follow came directly from the thousands of e-patients with whom my colleagues and I have had the honor of communicating over the past decade and more. This includes thousands of free-text responses to e-patient surveys conducted through the Pew Internet & American Life Project. Additional e-patient insights were passed on via my extraordinary group of advisors, the e-Patients Scholars Working Group. These invaluable colleagues have collaborated and brainstormed and debated and reviewed many earlier drafts. Together and separately, we have visited e-patient weblogs and home pages, participated in e-patient support groups, subscribed to e-patient mailing lists, and lurked in e-patient chat rooms and Web forums. So in addition to summarizing the opinions of some of the most knowledgeable professionals and researchers, I have tried, whenever possible, to let the reader hear the contemporary e-patient's voice.

As my colleagues and I journeyed through this rapidly evolving and largely uncharted domain, we tried to imagine a future healthcare system in which the many positive trends and developments we have encountered could be accepted, acknowledged, supported, and integrated with our current patterns of medical practice. I am immensely grateful to all who helped with this project, and I have relied heavily on their wisdom and guidance in preparing the pages that follow. The members of the e-Patient Scholars Working Group are listed separately.

My role in this project has been much like that of a host at a dinner party, inviting a remarkable cast of characters to share their insights and describe their visions. I have listened carefully and have asked innumerable questions. I've done my best to synthesize what I heard, and what I myself discovered, into an intelligible conclusion:

e-Patients are driving a healthcare revolution of major proportions.

The old Industrial Age paradigm, in which health professionals were viewed as the exclusive source of medical knowledge and wisdom, is gradually giving way to a new Information Age worldview in which patients, family caregivers, and the systems and networks they create are increasingly seen as important healthcare resources. But the emerging world of the e-patient cannot be fully understood and appreciated in the context of pre-Internet medical constructs.

The medical worldview of the 20th century did not recognize the legitimacy of lay medical competence and autonomy. Thus its metrics, research methods, and cultural vocabulary are poorly suited to studying this emerging field. Something akin to a system upgrade in our thinking is needed-a new cultural operating system for healthcare in which e-patients can be recognized as a valuable new type of renewable resource, managing much of their own care, providing care for others, helping professionals improve the quality of their services, and participating in entirely new kinds of clinician-patient collaborations, patient-initiated research, and self-managed care.

Developing, refining, and implementing this new open-source cultural operating system will be one of the principal challenges facing healthcare in the early decades of the 21st century. But difficult as this task may prove to be, it will pay remarkable dividends. For given the recognition and support they deserve, these new medical colleagues can help us find sustainable solutions to many of the seemingly intractable problems that now plague all modern healthcare systems.

We offer this White Paper as a series of preliminary notes on this new operating system.

- Tom Ferguson, MD
Austin, Texas; January 2006

by Gilles Frydman
Founder & President
Association of Cancer Online Resources (ACOR)

Bruce Shriver, PhD
Editor-in-Chief, ESUN


1. Thomas S. Kuhn, The Structure of Scientific Revolutions, (First ed.) (Chicago: University of Chicago Press, 1962).

2. A medical paradigm is a predetermined professional framework that specifies the appropriate role of the members of the profession, the role of those they care for, the type of work to be done, the types of problems to be studied, and the appropriate methods to be used.

3. Thomas S. Kuhn, The Road Since Structure, (Chicago: University of Chicago Press, 2000), pp. 165-177.

4. Ibid., pp. 165-177.

Participatory Medicine: an End to Rational Ignorance in Medicine

What is Rational Ignorance?

Rational ignorance is a term most often found in economics, particularly public choice theory, but also used in other disciplines which study rationality and choice, including philosophy (epistemology) and game theory.

Ignorance about an issue is said to be "rational" when the cost of educating oneself about the issue sufficiently to make an informed decision can outweigh any potential benefit one could reasonably expect to gain from that decision, and so it would be irrational to waste time doing so. This has consequences for the quality of decisions made by large numbers of people, such as elections or I argue how people deal with medical problems.

Patient-Centered Care

...Care must be delivered by systems that are carefully and consciously designed to provide care that is safe, effective, patient-centered, timely, efficient, and equitable. Such systems must be designed to serve the needs of patients, and to ensure that they are fully informed, retain control and participate in care delivery whenever possible, and receive care that is respectful of their values and preferences.1

Informed patients no longer want to be passive recipients of care. On the contrary, they want to be engaged in the medical decisions affecting their wellbeing. They want access to all the information that can help them understand their medical problems and manage their care. They want to feel free to ask their doctors questions, voice concerns and expect that these will be answered, without fearing retribution from this questioning.

Patient-centered care, adopted by the Institute of Medicine as one of the six aims for the 21st-century health care system2 is a concept of medical care developed and studied3-6 by health professionals over the last 20 years to address this problem. It is now embraced by the American College of Physicians and incorporated in their policy statement regarding the Medical Home.7 Although it is a much improved model of care compared to all the models based on the absolute supremacy of the doctors it retains a significant amount of top-down myopic vision. Its principles have not been discussed by or with strong direct input from patients or their legal caregivers but by health professionals who assume they can readily understand the mindsets of patients.

For example the most important of the 4 main principles, information sharing, still assumes that the health professionals are the unique source of appropriate medical knowledge and that patients should only hear about authoritative content regarding their conditions.8 Contrast this point with the:

  • Growing number of reports and studies showing the high number of biased articles published in peer-reviewed publications, until now considered the gold standard of authoritative medical information 9-12
  • Inaccurate reporting of medical stories in the general media 13

Unfortunately, this concept of patient-centered care doesn't address and doesn't embrace the communication revolution that has taken place over the last 15 years.

Participatory Medicine

Starting in the mid 90s a new paradigm of medicine was born ― first as a grassroots movement and then rapidly evolving into a phenomenon of great interest to public health professionals who started early to study its potential impact on the healthcare system (Ref. 14-15). This happened even while this new world of connected and informed health consumers was constantly denigrated by almost all physicians and physician organizations. This new paradigm was a direct child of the concurrent growth of public access to the internet and of the development of medical knowledge systems available freely to all (e.g., PubMed, OMIM, and PDQ Statements). Suddenly, everybody could gain easy and free access to information impossible to find until then, unless you had direct and constant access to the best medical libraries. This fact, associated with the availability of online peer communities profoundly transformed the level of understanding of millions of patients and/or their caregivers about the medical condition that concerned them.

Before the advent of the public internet rational ignorance in medicine was absolutely normal. Then, in a cyber-instant everything changed. The cost of gaining significant understanding about almost any medical condition dropped to zero. At the same time it became clear to many that we just couldn't and shouldn't wait any longer for any centrally engineered improvement of the healthcare system.

Let us fast-forward to 2008. We are still waiting to see any effective centrally engineered improvement of the healthcare system. Many large hospitals are experimenting with new patient-centered systems of care (Refs. 16-17). But we have now, for the last 15 years, been witnessing daily how laypeople, having usually gained a high level of health literacy related to the care of a single condition, can significantly alter the medical landscape for that condition and can eventually develop very significant patient-driven initiatives to further the scientific understanding of the disease. We call this new paradigm participatory medicine where the patients and caregivers are here to remind doctors that to provide better medical care they should always think of the healthcare system as if they were themselves patients. Instead of trying to protect an unsustainable hierarchy of knowledge all health professionals should now learn to love abundance. Abundance of information sources, of lay experts, of communication methods, of source of innovation and of funding mechanisms.

Participatory medicine is a collaborative driven approach to medicine. It is based on the active involvement of the patients and/or caregivers in all aspects of the clinical process to help ensure real shared decision-making where the treatments designed/chosen are understood and meet the needs of the patient. Participatory medicine is a direct consequence of the emergence of the world of networked healthcare consumers (patients or caregivers) and it specifically embraces these consumers as a major source of timely and accurate information regarding a specific medical condition. For unusual conditions these specialized consumers may easily be the main source of this information, usually very hard to find. For example, the rare cancers disease-specific online communities are almost always the best source of the most current, timely and accurate information regarding new clinical trials, approved treatments and access to the best specialists, among many other benefits. And they are surely the best place to find information impossible to find anywhere else, including patient reports of unreported cases of adverse events, rare side effects or even effects of dose changes, long before these are reported in peer-reviewed publications.

Informed patients who belong to these online communities can really have an informed conversation between equals with their physicians and we believe that they represent the best examples of the benefits of patient-centered care. In countless cases, these patients have been able to direct their treating physicians to new studies, new treatments, new knowledge that understandably is not readily available to an average modern doctor, already too busy running his/her office. By fulfilling, at least in part, the role of knowledge gatherer these patients/caregivers help to optimize the medical care they receive, without adding any additional burden to the already broken healthcare system we all face. By constantly talking to others with the same condition and asking for feedback, these connected healthcare consumers avoid countless unnecessary office visits, fulfilling some of the old promises of the self-help movement. I contend that the advent of participatory medicine, although clearly in its infancy, has already had a significant economic impact, a fact that no one has seriously studied or challenged. The time has come to invest research funds in this area.

by Gilles Frydman
Founder & President
Association of Cancer Online Resources (ACOR)


1. Crossing the Quality Chasm: A New Health System for the 21st Century, Committee on Quality of Health Care in America, Institute of Medicine, The National Academies Press, ISBN-13: 978-0-309-07280-9.

2, Ibid, page 6.

3. Through the Patient’s Eyes: Understanding and Promoting Patient-Centered Care, The Picker Institute, 1993; ISBN: 978-1555425449.

4. Patient-centered Medicine: Transforming the clinical method. Stewart M, Weston WW, Brown JB, McWhinney IR, McWilliam CL, Freeman TR, Thousand Oaks, CA: Sage Publications; 1995.

5. The patient-centered clinical method. 2. Definition and application. Brown J, Stewart MA, McCracken EC, McWhinney IR, Levenstein JH, Fam Pract 1986;3:75–79.

6. The impact of patient-centered care on outcomes. J Fam Pract, 2000, M Stewart, JB Brown, A Donner, IR McWhinney, J.

7. The Advanced Medical Home:  A Patient-Centered, Physician-Guided Model of Health Care, ACP,  January 22, 2006

8. The Thriving Practice: Patient-centered care. Monograph. August 2007. American Academy of Otolaryngology-Head and Neck Surgery.

9. The Effect of Conflict of Interest on Biomedical Research and Clinical Practice Guidelines: Can We Trust the Evidence in Evidence-Based Medicine?, John Abramson, MD, MSFP and Barbara Starfield, MD, MPH, The Journal of the American Board of Family Practice 18:414-418 (2005);

10. Vioxx Documents Offer Glimpse Into Ghostwritten Manuscripts, "Hire-A-PI," and Data Manipulation, Heartwire — a professional news service of WebMD, April 16, 2008

11. Conflict of Interest Controversy Casts Cloud Over Research Into CT Scanning for Lung Cancer, Medscape Medical News, March 28, 2008

12. Medical Integrity Up in Smoke? Conflicts of Interest and the Lung Cancer Screening Controversy, Beverly Moy, The Oncologist, Vol. 13, No. 5, 474-476, May 2008; doi:10.1634/theoncologist.2008-0098

13. How Do US Journalists Cover Treatments, Tests, Products, and Procedures? An Evaluation of 500 Stories, Gary Schwitzer, PLoS Med 5(5): e95 doi:10.1371/journal.pmed.0050095

14.  Alone together. Cancer patients and survivors find treatment –and support- online. It can make all the difference. Laura Landro. Oncologist 1999;4:59-63.

15.  Virtual Connections: Internet Health Care. Richard T. Penson, Renee C. Benson, Karen Parles, Bruce A. Chabner, Thomas J. Lynch, Jr, Oncologist. 2002;7(6):555-68)

16. Running a Hospital, Blog, Paul Levy, President and CEO of Beth Israel Deaconess Medical Center in Boston; See all entries on SPIRIT BIDMC;

17. Ted Eytan, MD. e-Health. Patient empowerment. Washington, DC., Blog; See all entries on LEAN;

18. Health Literacy: A Prescription to End Confusion; Lynn Nielsen-Bohlman, Allison M. Panzer, David A. Kindig, Editors, Committee on Health Literacy, The National Academies Press, April 2004; ISBN-13: 978-0-309-09117-6.

Open Access: A Basic Right Underlying Participatory Medicine

What is "Open Access"?

Open Access is a method of publishing that meets the following two conditions:

  • The author and copyright holder grant a free, irrevocable, worldwide, perpetual right of access to all users and a license to copy, use, distribute, transmit and display the work publicly and to make and distribute derivative works, in any digital medium for any responsible purpose, subject to proper attribution of authorship, as well as the right to make small numbers of printed copies for their personal use.

  • A complete version of the work and all supplemental materials, including a copy of the permission as stated above, in a suitable standard electronic format is deposited immediately upon initial publication in at least one online repository that is supported by an academic institution, scholarly society, government agency, or other well-established organization that seeks to enable open access, unrestricted distribution, interoperability, and long-term archiving.

For the biomedical sciences, PubMed Central is an example of such a repository. Two important points to note are:

  1. Open access is a property of individual works, not necessarily journals or publishers.
  2. Community standards, rather than copyright law, will continue to provide the mechanism for enforcement of proper attribution and responsible use of the published work, as they do now.1

What Is "Participatory Medicine?"

Participatory Medicine is a model of medical care, based on the collaborative relationship of the individual patient, enabled by information, software and community, and the entire care team. It requires equal access to all the clinical and scientific data related to the patient and a shared decision-making process. Participatory medicine is based on the understanding that optimally treating an individual patient suffering from a complex medical condition is beyond any single individual's ability and that actively involving the patient (or the patients caregiver as appropriate) is actively sought and welcomed.

Open Access Could Be Detrimental To Your Health (Or So Some Would Have You Believe)!

Enabled and empowered patients are a pre-requisite to experience the benefit of participatory medicine. This empowerment requires unlimited access to medical information and, consequently, we cannot achieve the full potential of participatory medicine until Open Access publishing becomes the new standard for the biomedical sciences. Some still think that the results of the democratization of access to medical information are disruptive to their profession, if not frankly dangerous.

Just a few months ago Scott Haig, MD, a surgeon, wrote in Time magazine a well publicized rant2 against the informed patients. Barely a week passes without some doctor complaining on TV, an interview or even a peer-reviewed article about the dangers of patients heaping piles of medical information on the 'expert' practitioner. Such statements and articles are merely the recent manifestations of views long held in the medical and scientific community about open access to technical information. Consider the following quote made by John Jarvis, Managing Director at Wiley Europe in 2004:

One of the things that intrigues me is that there is evidence that some of the support for open access is coming from outside the research community. There are some reports of members of the public wanting to read this kind of information. Without being pejorative or elitist, I think that is an issue that we should think about very, very carefully, because there are very few members of the public, and very few people in this room, who would want to read this type of scientific information, and in fact draw wrong conclusions from it. […] I will say again; let us be careful because this rather enticing statement that everybody should be able to see everything could lead to chaos. Speak to people in the medical profession, and they will say the last thing they want are people who may have illnesses reading this information, marching into surgeries and asking things. We need to be careful with this very, very high-level information.3

What is at stake here is limiting the potentially exponential growth of participatory medicine. But in order to see millions of people take greater responsibilities in their own care and working, as true partners, with their clinicians, we must insure unfettered access to all the current knowledge. Thankfully, we have a growing array of tools and technologies to obtain this medical and scientific information. Open Access4 is one of these technologies and may very well end up being the most powerful change agent for the healthcare system, particularly if it becomes associated with social networking functions.

Since the publication of the Institute of Medicine 2001 report “Crossing the Quality Chasm: A New Health System For The 21st Century” everybody is talking about patient-centered medicine and shared decision-making. I suggest that these are empty words as long as patients do not have full access to both the full-text scientific literature pertaining to their condition and all of their entire medical files.

The Necessity of In-Depth Medical Information

Hunters and gatherers of medical information5 about a rare disease can have a profound impact when they are informed of the latest research evidence as well as other patients’ experience. When connected to an active online community these patient advocates can become a powerful force able to transform the quality of care received by thousands of other patients suffering from the same rare condition. Clearly, Open Access is an absolute necessity to maximize the effectiveness of this process. Sharon Terry, President and CEO of Genetic Alliance and a patient advocate for PXE (pseudoxanthomaelasticum, a rare connective-tissue disease that can lead to bleeding, skin lesions and blindness) makes the following compelling statement:

My entry into Open Access is personal, because in 1994 my two children were diagnosed with a rare genetic disease called PXE. Immediately, my husband Patrick and I had a very personal experience of what un-open access looks like. We wanted to get some quality information about the kids' disease, but instead we were subjected to what we could garner through filtered information in reviews or medical encyclopedias. What we got from those kinds of publications was often incorrect, but we didn't know it at the time because we had nothing to gauge it against. We didn't have a shard of medical information in our bones. As my husband likes to say, we didn't know a gene from a hubcap. […] At the beginning we really wanted to get more information. But when we went to try to find that information, we discovered that it was very hard to get. We lived in the Boston area at the time and were lucky to be able to go to one of the best medical libraries in the world. We went to the Harvard University library and found that we had to pay $25 to get in the door, which we understood because it's a private university. So we paid the $25, but after about ten trips to the library we decided we couldn't afford to continue that way.6

Like almost all patient advocates for rare diseases Sharon and her husband had no medical training: she was a college chaplain and he was a fire protection engineer. But as countless Association of Cancer Online Resources, ACOR7 stories have shown, the initial lack of medical training does not prevent people in need from wanting to learn a lot more about a specific medical condition. Sharon Terry has spent the last decade energetically acquiring the skills necessary to contribute decisively to PXE research. Sharon Terry, like many other patients or caregivers dealing with rare diseases knows that Open Access was the game-changing development. Without it she would never have access to the information she found. And she would never have found the researchers, located the patients, and eventually advocated for gene discovery and catalyzed research.

How ACOR Started

Fifteen years ago, when ACOR was formed, access to medical and scientific information was significantly limited by various technology and legal hurdles, ranging from electronic content control and copyright limitations. Cancer patients experienced their version of a Berlin wall, with professional entities blocking them from accessing in-depth scientific information. That wall started to crumble in 1995 when the National Cancer Institute (NCI) allowed open access to Physician Data Query (PDQ) files over the internet using early browsers.8 PDQ statements had been available since 19879 and in early 1995 the system was still designed specifically to deliver data only to clinicians:

The National Cancer Institute's computerized information systems have been designed to help physicians cope with the information explosion by translating the medical literature into usable forms. Systems developed by the NCI's International Cancer Information Center provide access to a comprehensive source of bibliographic citations on cancer research (the CANCERLIT database) and to current, peer-reviewed syntheses of state-of-the-art clinical information on cancer (the PDQ database).10 [emphasis added]

Public access to the World Wide Web became a reality in 1993. In March of that year, the WWW traffic represented 0.1% of the internet traffic, and 10 times that amount just 5 months later! The public release, in November 1993, of Mosaic, the first web browser capable of displaying images, resulted in the swift and massive growth of the internet that followed. Soon after its introduction a new series of PDQ statements, written specifically for patients was made available. Suddenly the PDQ statement role was changed to “provide physicians and the general public with a responsible assessment of current screening, prevention, and treatment approaches to cancer.” [emphasis added] Originally the NCI team thought that lay people would only be interested in the patient statements, not the much more complete and scientific PDF statements for health professionals, full of references to peer-reviewed articles. Discussions at the NCI with patient advocacy representatives helped to make both patients and health professional statements available to anyone, although there was originally very strong opposition from more than a few doctors and other health professionals who believed that the original content for health professionals was too complex and possibly dangerous for patients. But to everyone’s surprise many visitors were instantly interested in the section designed for health professionals.

I remember having access to these documents when my wife was diagnosed with breast cancer. I used the patient statement for 10 minutes to familiarize myself with an overview of the disease and the medical terminology. Then I immediately started reviewing the statement for physicians to understand our options, from potential treatments and their side effects to statistics about the disease. After spending a while reading the PDQ statement on breast cancer I was able to confirm the scientific validity of what I had been told by a couple of very well informed members of the BREAST-CANCER mailing list,11 one of the original cancer “listserves”. (A listserve is a computer program that automatically sends messages to multiple e-mail addresses on a mailing list).

This was my initiation as an e-patient, and triggered my request for a second opinion. In an afternoon I understood that the first physician we saw had not provided some of the key information we needed to make an informed decision regarding the treatments to come. I became an e-patient just a few hours after I looked, for the first time ever, at the scientific literature on breast cancer.

It was incredible to compare that first internet experience with the incredible difficulty of finding in-depth medical information just six years prior. Then, in 1989, in pre-browser, pre-internet days, one had to go to medical libraries and spend many days collecting information about a complex medical condition to be an effective patient advocate. I had to spend a week to understand the cardiac problem that suddenly confronted a family member. My two experiences were so far apart that I instantly began to imagine how the new online connectivity could be leveraged to build a repository of patient-generated conversations about specific cancers. It was much later that I realized that the explosive spread of the internet and our concomitant ability to distribute large amounts of electronic data at no cost are strong arguments for Open Access.

The PubMed Effect

The National Library of Medicine (NLM) first released PubMed in January 1996 as an experimental database with full access to MEDLINE®. The word "experimental" was dropped from the Web site in April 1997, and on June 26, 1997, a Capitol Hill Press conference attended by Vice President Al Gore officially announced free MEDLINE access via PubMed:

MEDLINE...will henceforth be available free to the American people. […] This development...may do more to reform and improve the quality of health care in the United States than anything else we’ve done in a long time.

In a short period of time after the launch of ACOR in 1996, volunteers started to see mention of abstracts from PubMed, and within two years PubMed had become the official tool to debunk misinformation in the ACOR online communities. That was the first obvious use for the abstracts. But many unexpected uses of PubMed produced remarkable results:

  • Members of some ACOR lists for rare types of cancer started complaining about the content of the PDQ statements related to their disease, often complaining that the most current information, available first through PubMed and then on the list were absent from the statements. These negative remarks were among the first manifestations of the “wisdom of the crowds” I witnessed in our groups.

  • A member of the ACOR list for Leiomyosarcoma (LMS) was looking to partner with a young and active pathologist to create a central tissue bank for his disease, a revolutionary idea at the time (with only 4 LMS patients/million LMS tissue samples and patients are very scarce and scattered across the globe, making studying LMS very difficult). He decided to use PubMed to find an expert and looked for the pathologists that were publishing the most about LMS. The tissue bank they have since created collected over 300 tissue samples. Using state-of-art technology, the expert pathologist, Dr. van de Rijn, conducted an extensive DNA & tissue microarray analysis. This study is by far the most extensive and promising research ever done on LMS and many people are anxiously awaiting the pending results of this work.

  • In other groups expert patients became specialized in using PubMed advanced search capabilities and became incredible filters of high quality information for all the members of their community.

In a few years, with these few online tools, the old paradigm of medicine had been destroyed. For thousands of patients suffering from rare cancers, their experience had evolved into a much higher level of control over their treatments. Unfortunately, this phenomenon was taking place in online communities that were barely noticed. The unspoken trust of the users of any ACOR online community rests on our strong will to protect their privacy. All of the community’s content is hidden from the search engines, blocking ACOR’s ability to advertize all the great innovations taking place in these groups.

Abstracts Are Good. Articles Are Much Better!

As the ACOR lists became a regular vehicle for the transfer of PubMed abstracts, a new phenomenon started to bubble up from some groups. As people became accustomed to PubMed searches they also understood the limitations of the abstracts and started looking for the full text articles. We started to see more and more conversations in the lists about the copyright implications. In almost every active online community a very small number of subscribers became the de-facto librarians for the group and started collecting and archiving full text articles that they would share, privately with other members of the group. Few people in our online communities had ever heard of Open Access and fewer yet wrote about the developments taking place in the scientific publishing world in parallel. After noticing the growing number of calls on ACOR to gain access to full text articles that I started looking into Open Access12 when a friend mentioned ArXiv,13 an e-print service in the fields of physics, mathematics, computer science, quantitative biology and statistics, as a model we should emulate. As ArXiv’s founder Paul Ginsparg wrote in 200114:

The essential question for "Electronic Publishing in Science" is how our scientific research communications infrastructure should be reconfigured to take maximal advantage of newly evolving electronic resources. Rather than "electronic publishing" which connotes a rather straightforward cloning of the paper methodology to the electronic network, many researchers would prefer to see the new technology lead to some form of global "knowledge network", and sooner rather than later.

Open Access: A Clear, Basic Right

The activities to promote Open Access accelerated in 2000. In less than two years, PubMed Central was made available, Wikipedia was started, the Budapest Open Access Initiative15 was launched and the Creative Commons16 was created. PubMed Central (PMC) is the National Institute of Health's (NIH) free digital database of full-text scientific literature in biomedical and life sciences. The Budapest Initiative is at once a statement of principle, a statement of strategy, and a statement of commitment from participants representing many points of view, many academic disciplines, and many nations, all with one purpose: to accelerate progress in the international effort to make research articles in all academic fields freely available on the internet. The Creative Commons is a non-profit organization with a mission to define the spectrum of possibilities between full copyright — all rights reserved — and the public domain — no rights reserved. Their various licenses help anyone creating an intellectual work in retaining their copyright while inviting certain uses of their work — a “some rights reserved” copyright.

The road to Open Access is still not completely constructed. In 2002, the Department of Energy (DoE), under strong lobbying from publishers and members of the Information industry, terminated PubScience, the equivalent of PubMed for various scientific fields. It is notable that the DoE terminated PubScience while almost all public comments strongly supported it.

The biggest funder of Scientific, Technical and Medical (STM) journal articles is the NIH. Not surprisingly the NIH has been the first federal agency to champion a policy for public access to the critical biomedical research it funds, through its Policy on Enhancing Public Access to Archived Publications Resulting from NIH-Funded Research, which was implemented in 2005. The NIH policy originally requested eligible investigators to deposit copies of their final, peer-reviewed manuscripts into PubMed Central, so that they may be made publicly available twelve months after publication. (While agencies around the world, including the Research Councils UK and the Canadian Institutes for Health Research, have backed six-month embargoes, the NIH adopted a twelve-month window as a compromise with journal publishers who feared a loss in revenues). Acting responsibly, the NIH adopted this voluntary deposit policy but participation was extremely low because STM publishers were opposed to it and the authors were not well informed about it. So, in the 2008 Labor-HHS Appropriations bill, Congress directed NIH to adopt a mandatory deposit policy. In April 2008 the NIH Public Access Policy was revised and, to ensure its success, it is now mandatory for researchers. Upon publishing its revised policy the NIH began a formal process to engage its stakeholders in enhancing the effectiveness of the policy and conducted a Request for Information from March 31 to May 31, 2008. A significant portion of those who commented were e-patients/-caregivers dealing with cancer or a rare disease. Most commented with very strong arguments for their absolute need for Open Access.

The revised policy is now under attack in Congress. The newly introduced “Fair Copyright in Research Works Act” (HR6845) is designed to amend current U.S. copyright law and permanently disable the public access to taxpayer-funded research that is so important for all of us.

In a recent testimony, about HR6845, before Congress, NIH Director Zerhouni demonstrated the undeniable and tremendous advances made possible when research is accessible and searchable:

When viewing a report in NIH PubMed and PubMed Central databases, at the touch of a button we can link to papers that are determined to be related, as well as to papers that were actually cited. We can also link to related chemical structures, proteins, viruses, and other data, allowing us to make discoveries that advance science and even prevent deaths.

For example, about three years ago, a child was hospitalized with an undiagnosed illness in Minnesota. The state health laboratory had isolated an unknown virus. After determining the DNA code of the virus, laboratory staff used the internet to access the 55 million DNA sequences at NCBI and immediately found a match. The virus turned out to be the first polio case in the United States since 1999…

Dr. Zerhouni also said:

… Scientists are accumulating new information at a staggering rate, and I am witness to an unprecedented explosion of knowledge.

There have been times I was informed of more discoveries in three months in such areas of research as genomics than I had in the previous five years combined – and the rapid pace continues today. These advances have illuminated previously hidden areas of the life sciences, including new and significant discoveries regarding the cellular underpinnings of disease. Our new knowledge of genes, proteins, and molecules is leading us to new areas for exploration in biomedical research.

[…] Every single week, scientists and the general public are downloading more information from NIH’s databases and web-based archives of publications than exists in the entire Library of Congress. Scientists are not the only beneficiary of publicly accessible information.

[…] Surveys indicate that more than 60 percent of American patients consult internet medical sites prior to seeing their physicians, and they would benefit from access to the most complete and unbiased information available.

[…] The second revolution emerged from our ability to manage and integrate these enormous quantities of data being produced and to make them available in ways to speed research that did not exist even ten years ago. We are now capable of taking individual discoveries and integrating them with all other research findings – both publications and data. Scientists can connect the dots between discoveries instantly, an advance analogous to moving from searching for fingerprint matches manually to matching prints in a database of millions in an instant.

Let's adapt the decision implemented at the NCI in 1995 to all of the biomedical sciences field: any information written for scientists or doctors should be made available to the public without barriers. Summarizing and rewriting for lay audiences is definitely welcome and extremely useful. But so is access to the original text. And no one knows what is the best form of information for a particular individual, since conditions may change over time. Therefore Open Access to any scientific publication should be the norm. Last month I was at the biannual meeting of a rare cancer advocacy organization where patients, informed about the different manifestations of their disease based on the mutations on different exons of a single gene, were discussing, directly and one-on-one, as is normal in a Q&A session in a scientific meeting, the clinical implications of such scientific discoveries with some of the best clinical specialists. That was a prime example of what the future of participatory medicine can be when e-patients and health professionals recognize the benefits of informed and organized patients.


To recapitulate, the necessity of Open Access to promote participatory medicine is clear:

  • The pace of scientific discovery is dazzling
  • Scientific data is accessed by countless people with varied backgrounds
  • We never know when or who will make a significant discovery if people with a clear focus on discovering solutions for a specific condition have access to all the scientific knowledge.

We have had enough examples on ACOR demonstrating the reality of “the wisdom of crowds”17 and the power of serendipity. Each ACOR list has a core contingency of educated and journal-article informed members who set the bar for list discussion. Over the years too many significant pieces of information have been found by these members through PubMed and PubMed Central followed by extensive communication with group members to still think that access to the fast growing depositories of medical knowledge should be restricted in any way. The contemporary world of connected and informed patients can often show the limit of the experts’ omniscience and particularly when dealing with a rare disorder.

Now that Open Access material is becoming available on a large scale, social networks with their own brand of expert e-patients are starting to build advanced scientific sites becoming focused repositories of scientific data, including articles, clinical trials information, tests and reports expert analysis among other uses. At least one of these private sites are already providing information about clinical trials that one wouldn’t normally find through the central clinical trial website.19 We will hopefully see an exponential growth in this kind of websites, just as we have seen an exponential growth of health related social networks.

At least we are sure that we will see many unexpected uses of Open Access literature. What Ben Segal eloquently wrote, in April 1995, about the history of the internet18: “the key words that came to my mind […] were: synergy, serendipity and coincidence” remains true today.

by Gilles Frydman
Founder & President
Association of Cancer Online Resources (ACOR)


1.; “Bethesda Statement on Open Access Publishing”; Released June 20, 2003

2.; “When the Patient is a Googler”; Scott Haig; Nov. 08, 2007

3.; Oral evidence to inquiry, 03/01/2004; Select Committee on Science and Technology, UK Parliament; Examination of witnesses ; John Jarvis (Managing Director, Wiley Europe)

4.; Open Access Overview; Peter Suber; 06/19/2007 and; A Very Brief Introduction to Open Access; Peter Suber; 12/29/2004


6.; Interview: Sharon Terry; Oct 4, 2004; Patient advocate calls for Open Access


8.; Oncology. Vol. 9 No. 4; Apr. 1, 1995; NCI's Cancer Information Systems-Bringing Medical Knowledge to Clinicians; Susan M. Hubbard, RN, MPA, Nicholas B. Martin, and Anne L. Thurn, PhD; International Cancer Information Center, National Cancer Institute

9.; Patent Office: PDQ cancer treatment information system

10.; Oncology. Vol. 9 No. 4; Apr. 1, 1995



13.; ArXiv announced on Oct. 3,2008

14.; Creating a global knowledge network




18.; A Short History of Internet Protocols at CERN; Ben Segal / CERN PDP-NS; Apr. 1995


Participatory Medicine:
Using Twitter to Maximize Serendipity in a Social Network

The ACOR Model and Experience of Sharing Information

Every day patients suffering from rare conditions experience the online version of the traditional "finding a needle in a haystack" problem.  Finding relevant information is at best difficult if not outright impossible for too many people. In many cases it is possible to find some static information about the condition on a major hospital or governmental website, such as the National Institutes of Health. But, where do you turn to find the latest news and scientific discoveries that are of specific interest about the condition?  If you are lucky you are already a member of one of the old and established social networks available on the Internet.  If you are not, your ability to get current information is almost nil, unless you are a medical librarian or have received active help from one. Too many people are still denied access to this information which often appears in medical journals.

Most of the truly amazing and life-transforming events that have taken place through the ACOR system over the last 13 years have been a result of serendipity. This applies particularly to all of the groups dealing with a rare disease. Conversations with long term observers of these social networks confirm the importance of serendipity in all of them.  Suddenly, by gaining access to a bit of information located in the archives or sent by a member of the group, someone else may make a "connection" with something said earlier by another member. This serendipitous "connection" could have a deep influence on an entire group of patients.

This serendipitously finding of relevant and significant information is almost in complete opposition with the way health professionals have been taught their specialties. This non-linear and non-Cartesian way to get knowledge "out of the box" explains why members of the ACOR communities have been well served for many years. ACOR was built from its origin with a non-hierarchical structure.  We planned a "cooperative" of cancer online communities to offer cancer patients many tools to share what only a minority of contributors could find. Our mission has consistently been to find tools to end the ill-fated rationing of medical information to lay people. By definition, if it is of value to physicians, it could be of value to any or all of their patients and caregivers and should be made freely available. Participatory Medicine can only happen when there is a true symmetry of knowledge.

Our archives are a true gem but access to them is difficult. The search engine integrated with the Listserv software is cumbersome and the results it produces are far from what a generation bathed in using search engines such as Google is used to. Nonetheless, over the years, some of our users have found references to very hard to find information, including early clinical trials, new tests, specialized doctors and peers who have had very similar experiences.

Encountering Twitter

Noticing that these encounters with unexpected pieces of information have resulted many times in life-changing choices, I have been on the lookout for tools that could optimize serendipity. For years ACOR has provided what was then easy access to the latest scientific abstracts for every type of cancer. We have also run a cancer news aggregation service for many years. This useful service has received very little coverage and the number of users has been consistently and disparagingly low. Different strategies have been used on the ACOR website to raise the awareness of our users, including putting a variety of links across the site to these dynamically generated pages. Nothing has worked.

A year ago I was directed to this new service, and told it was the latest darling of the West Coast tech intelligentsia. This new website had a definitely funny name, Twitter, and a deceptively simple website. It is a microblogging service with an absurd text limit -- it accepts messages that must be less than 140 characters long. A person accustomed to writing long posts to the ACOR mailing lists and to the blog, can find this extreme limit a severe handicap and deter their interest in this new service.1 Not being able to find what the frenzy was about Twitter, I made a single micro-post and like many people never wrote again. A few months later I read about Twitter’s impressive growth and decided to have a more in-depth look at the universe developing around it. I found a fast growing number of Twitter clients and applications allowing you to organize what looks at first hand like a useless, puzzling noise-generating website for teenagers used to sending text messages to their friends.2

Twitter: What is it and how does it work?

Twitter is a free social messaging utility for staying connected in real-time. Users can send and receive updates (the 140-characters messages), also called tweets,  via the Twitter website, SMS, RSS, or through a growing number of applications such as TweetDeck, Twhirl, TwitterMobile, Tweetie, Twinkle, Twitterrific, Feedalizr, Facebook, Twidget, a widget application or even Twitterfox, an add-on for Firefox (see below for links to Twitter tools and applications.). Four gateway numbers are currently available for SMS: short codes for the United States, Canada, and India, and a United Kingdom-based number for international use. Several third parties offer posting and receiving updates via email.

Twitter usage growth is phenomenal -- from 300,000 users in July 2007 to 1 million in April 2008 to 5 million in September 2008. The company just announced a 900% yearly growth curve of the number of active users. It has clearly become a major social network and provides benefits to many of its users who spend large amounts of time writing these micro-posts. In this time of extreme financial difficulties when venture capital firms are refusing to fund most projects, Twitter just closed a very large round of venture capital funding guaranteeing its viability.3  The current funder, Todd Chaffee, wrote:

Our model is to find the winners and market leaders that are going to grow at a disproportionate level. Twitter falls in that category. Twitter is bigger than a lot of people realize and growing faster than a lot of people realize, but it has not hit the mainstream yet. It is just starting…. [Some people say] Twitter is whatever you want it to be. But at the end of the day you have this open, one-to-many network, and to enable that is this platform. … The reality is that it is a network/platform which has millions of users and thousands of applications. Twitter does three things. It facilitates social connections with friends, colleagues, writers, and celebrities. The second is knowledge transfer. It is a real-time mechanism for tapping the wisdom of millions of people. The third is social expression. It is a mechanism for the global community to express itself.

Chaffee added "Twitter is Open, Real Time, Ubiquitous , Scalable & Persistent. It is the only service we’ve found that has all of those things. None of the other things out there, Facebook, YouTube, LinkedIn, has all of those variables. That is why Facebook tried to buy them.4"

Twitter is accelerating human connections and how it is done needs to be understood. Twittering forces you to change your writing style. Many, if not most, of the tweets include a link to another internet resource, such as a blog post, a PDF file, an image or a YouTube video. This link is part of the 140 characters and Twitter has forced the explosion of the number of URL shortening services. With a minimum of 17 characters per link you can count on having about 120 remaining usable characters to write an interesting message. The short format of the tweet is a defining characteristic of the service. Surprisingly, it facilitates informal collaboration and very fast information sharing and provides relief from rising email and IM fatigue. A growing number of journalists are using Twitter because they have noticed that news events appear faster on Twitter than anywhere else. Twittering, because most of the exchanges are public and broadcast , is also a much more democratic method of communication: you can share  information with people that you wouldn't normally exchange email or IM messages with, opening up your circle of contacts to an ever-growing community of people who share your interests. You can follow the posting of many luminaries that use Twitter with a passion (see list of luminaries blow).

Your tweets are displayed simultaneously on your profile page (see the example of my personal account)5, on the home page of each of your followers, and in the Twitter public timeline (unless you disable this in your account settings). Over 85% of Twitter’s active users are happy to have their updates public as this is the most effective means to publicly broadcast your opinions and discoveries.

The exponential growth of Twitter is principally due to the development of a series of APIs. The traffic through the various APIs is now twice the traffic through the Twitter website.6 Twitter is fundamentally a Web 2.0 application. It is essentially a new communication protocol with its own specific set of rules. It offers a very powerful platform to freely broadcast specialized information. It can further our dream to bring free medical information out of its current publishing limits.  

Twitter: How do people use it?

Twitter has many uses for both personal and business use. It's a great way to keep in touch with your friends and quickly broadcast information about where you are and what you're up to. Many users send mundane tweets like "I'm going to twitter meetup and aching for some pizza. Anyone interested to share?"

But, it is also used by many professionals to promote their ideas and share what they are reading, learning, discovering or inventing. Many of the big tech names are actively using Twitter in this fashion. For example, Cory Doctorow, sent the following tweet yesterday: "If content is a river, DRM is a urinary tract infection, delivering the flow in a painful drip #toc".  Similarly a growing number of young influential doctors are using Twitter to let their constituency know of their latest writing. See @kevinMd. a practicing primary care physician known as one the best medical bloggers. or @Allergy, an internist, specialized in allergies & immunology and NEJM advisory panel member.

It is this use of Twitter that got me interested. I could suddenly see how it could be used as the missing broadcasting tool for the ACOR cancer scientific updates. Just imagine that, with a single click, you can receive at no cost instant notification of a new scientific abstract or piece of news that relates specifically to your disease. ACOR is now doing exactly that. Producing over 150 specialized Twitter feeds, we are letting non-ACOR subscribers gain access to the information delivered until now only on the ACOR website. In addition, a general cancer news channel has been sending updates for a little less than 3 weeks.

In order to better understand the nature of Twitter, a choice was made to not make any public announcement about this service. Nonetheless, by the time this article appears in ESUN we will have reached well over 200 followers. And the trend is accelerating. The early adopters of the service were mostly executives of various cancer advocacy organizations, showing that health and advocacy professionals using the system pay close attention to the twittersphere. One mark of the success of a Twitter user is the reposting of his/hers tweets, a process called ReTwitting and marked either RT or Via, as in "RT @cancer_news: (2/5) New evidence of hormone therapy causing breast cancer, Stanford professor says. The @cancer_news feed is being RTed a little more every day, showing that its followers find value in it.  Just imagine the potential number of followers of this service as soon as we start making public announcements about its existence.

Once each of the feeds has a significant number of followers we can imagine starting a tighter integration of the feeds with the existing ACOR listservs. The cancer feeds interrogate the central PubMed database every half-hour with custom queries for each disease. The queries are prepared by an algorithm taking into account the rarity of the disease and the historical number of articles published about it over the last few years. Most of these queries require access to the PubMed advanced search page. The cancer feeds, instead of requiring real proficiency in the querying of PubMed provide very easy access to the latest relevant information. For an example see @breastcancer09 or @leiomyosarcoma.  

You can already see potential uses of these feeds that are significantly augmenting the chances you’d discover a "hard to find" connection. The ACOR page has a small example of what we can expect as the feeds add content to the central Twitter content. If you do a search for Sorafenib in Google, the first information you’ll read is the following: "Sorafenib (Nexavar, Bayer), is a drug approved for the treatment of primary kidney cancer (advanced renal cell carcinoma) and advanced primary liver cancer (hepatocellular carcinoma).". If you do a similar search in Twitter you will get the following results:

Figure 1

In an instant you are able to see that Sorafenib is now in use for at least 2 other types of cancer.  It is this kind of findings that the ACOR cancer feeds will bring to people in an instant, surely maximizing the chance that serendipity will be of use to many more cancer patients.  As the cancer feeds continuously add highly focused quality content it is probable that the internal Twitter searches will consistently return results that will be of real clinical benefits to people in need. I plan to write an update about this project in six months.

Because Twitter is really a communication protocol, it is very easy to get completely lost in this sea of seemingly unrelated human exchanges, mixing lectures and small talk like they were one and the same. The next application we will introduce will help alleviate this problem by creating a live directory of all health related twitter users. The application will follow in real time all the content from these "HealthBirds" and will organize their conversations in easy to follow webpages.  For example you’ll be able to follow what all the hospitals who have a Twitter account have been communicating in the last few days.

As this service grows I am convinced we will see many more potential uses to free information.

by Gilles Frydman
Founder & President
Association of Cancer Online Resources (ACOR)




3. Please, Take Our Money!