FrançaisACOR, the online community founded in 1995, counts +60 000 patients and caregivers concerned by cancer.
Having worked with Gilles Frydman since 1997 when they were co-founders of the former Internet Health Care Coalition, Denise is happy to have co-authored the following post with Gilles regarding ACOR.
When ACOR was created in 1995, access to the Internet was limited to a small minority of the population. The terms "e-patient" and "participatory medicine" did not yet exist. Patient autonomy in relation to the medical establishment was to be created from scratch.
Gilles
Frydman's family had just been through a family crisis that showed him how
important it is for patients to communicate both with patients and other professionals to defend their own medical interests. Gilles's wife Monica had unfortunately had to deal with a "know it all" physician who had allowed for 10 minutes to announce a
cancer diagnosis and prescribe extensive treatment, while tolerating no key questions. As a result, Gilles went on the web, found the breast cancer list and saved Monica from a major medical error. Without Monica, there would be no ACOR.
The concept of the quality control of medical practice was not widely known either, since before the Internet, it was difficult to keep up with medical knowledge. In theory, only information on accepted medical practices was published, but it could be years before doctors would learn about updates and even longer before patients could get hold of the informatio. In terms of learning which drugs were being tested in clinical trials,, the information circulating was often off the mark.
Helped
initially by volunteer scientists, ACOR took a major step forward in 1996 with the appearance of PubMed. Richard
Klausner, director of the National Cancer Institute and Barbara Rimer,
Assistant Director, made.
communication about cancer a national priority in the U.S. The stage was set for ACOR to take off.
How does ACOR work?
- ACOR is a system of organized online communities in cancer, with groups per disease and cross-cutting themes (side effects, pediatric patients, clinical trials ...) These groups operate by email. Each listserv is managed by one or more volunteers who are rarely health professionals, but are able to understand scientific papers and know how to use library resources such as Medline (PubMed). ACOR's goal is to provide current, personalized medical information and psychological support.
- Patients share information about their ongoing treatment and experiences - while knowing that although each case is unique, there is much to gain from sharing experiences. Participants also raise many questions, and all the exchanges are archived.
- Any information of a scientific and medical advice must be referenced in PubMed. List members regularly cite relevant scientific publications and disseminate best practices.
Being
able to access continuous information on advanced scientific
developments in "your" disease state is of
incalculable benefit. Moreover,
the jargon-free approach makes
for clear conversation between members of a group. The most active lists are those in which volunteers are the most informed, whether patients, their caregivers or physicians who have become patients. Among
these caregiver volunteers, many continue to help others, even if their patient has been
dead for years.
Take the three main types of cancer treatment: surgery, medication, radiotherapy. A surgeon prescribes surgery, a physician medications, a radiation therapist, the third. When doctors
become patients, they attempt to share this
knowledge with other patients and become unique channels of
communication between doctors and patients. They help newly diagnosed patients quickly understand the key issues for which they must obtain
accurate answers. The empathy of these professionals is enlarged and allows them to go beyond "business as usual". How to ensure that practicing professionals can also act the same way? This is ACOR's task.
ACOR in figures
ACOR's 159 public lists and over fifty private lists. There are between 60 and 3000 people on a list or collectively more than 60,000 people. 4.5 million messages are archived. More than 650,000 people haved used the system since its inception. Acor hosts the largest collection of patient narratives in the cancer field.
Like most online communities, only 15% of members actively participate and write posts; the remaining 85% only read. These 85% of subscribers reap profits and often remain on lists for years.
Some examples of the network effect
Here are several examples of the benefits of participation in ACOR lists.
ACOR lists direct the patient to a more suitable treatment or facility in minimal time, expedite recruitment for clinical trials
and
provide natural pharmacovigilance on vital issues.
In 1997, ACOR created, at the request of a patient expert, a special
list for long-term survivors of non-Hodgkin's lymphoma and Hodgkin's
disease (with long-term treatlent survivors dating back over 30 years) . In those days, nobody talked about the side effects that could have arise, 30 years or more after treatment. The doctors were simply not aware. An expert patient had nearly died of a delayed heart complication and noticed that she was not. The
original purpose of the new list was to be an "advanced warning
system" for patients complaining of heart problems whose physicians did not understand the urgency.
On
numerous occasions, Gilles witnessed people arriving on the
list, expressing specific symptoms and being advised to proceed
immediately to the nearest hospital emergency room, lest they have a heart attack. Today, since these long-term effects of treatment are known, the list has evolved and deals with other subjects.
On the kidney list, the
following scenario was repeated thousands of times over 13 years. A newly-diagnosed patient addresses a particularly renowned cancer establishment thinking that they will naturally provide the best advice. However, this institution never proposes the only
treatment offering some freedom from relapse. Because
this treatment can only have maximum impact if it is received first, it is
clear how the formation can have
considerable impact on the duration of survival. We
cannot count the number of patients who changed institutions as a result.
ACOR identified the COX-2 problems, before they were made public.
Following the agreement by the FDA (Food and Drug Administration) for a
new therapy that would be administered via injection for 15 minutes, on one list, we saw a growing number of patients with negative experiences . In
a few months, several patients on the list reported that they had
nearly died from acute renal failure and others did die. The
volunteer manager of the list quickly contacted experts who recommended the administration of the injection for 30 minutes. This recommendation was published on the list, with instructions to all physicians. Several months later, the same recommendations were made formally by the pharmaceutical company.
When osteonecrosis of the jaw was reported as a side effect of a
new therapy, non-physician members suggested avoiding invasive
dental procedures, and this was proven correct. To
bring this knowledge to the medical world ACOR volunteers, working
in tandem with medical experts, did an online survey. Obtaining
responses from 904 patients in 30 days through the use of multiple
lists, they found 62 cases of osteonecrosis, and the results were
published in leading medical journals like the New England Journal of
Medicine, the annual conference of the American Society of Hematology (ASH) and the Advisory Committee of FDA's oncology drugs (ODAC).
Two months ago, the kidney cancer list received a message at 8 am: "I need an answer immediately. I am taking treatment XYZ (for cancer of the kidney). I woke up this morning; all my hair and my body hair are white ... I searched on Google, the FDA, the pharmaceutical compan,y and I found nothing! Does someone know about this? Within hours, five of the 2000 members responded "Do not worry. This is an effect of treatment X. Everything will be back to normal after treatment cessation. "In
all probability, the doctor treating the patient would have not heardd of this specific problem, a rare effect, and could not reassure him."
The importance of conversations
Our individual ability to analyze data is completely overwhelmed by our ability to produce them. Pubmed in 1999 was 9 million citations of articles. Today that figure exceeds 19 million and increases by 80,000 each month.
The chronology of clinical trials is no longer coherent with the transmission of information. There used to be several years between the conception and publication of a clinical trial. Now
patients talk about their experiences on ACOR lists throughout the trial. So double-blind studies do not exist anymore and we must review procedures to
ensure the maximum benefit for all patients.
It is vital that each country promote both health education for citizens and their freedom of expression. Clearly,
after fifteen years of experience, a growing number of patients have seen
that they can learn a lot about managing their health problems and quality of life, simply by following and intervening in conversations with otehr patients.
We
see here and there in the world interest in initiatives such as that
of ACOR. In Europe. Eurordis, two years after meeting ACOR, created a platform for rare disease lists. ACOR
is working with a group of health organizations to increase the field as much as possible for groups of
expert patients. http://www.acor.org
Syndicate this blog
Great article.
Posted by: Noah Berkowitz | 08 December 2011 at 08:49