Information Technology Reference
In-Depth Information
particular populations of patients. Examples would be pharmaceutical companies or
companies with early stage products that want to learn from patients that have the
condition they seek to treat. For example, a pharmaceutical company might partner
with the site to create a portal for engaging organ transplant recipients, a site within
the site, where it can talk to patients and learn from them while at the same time
considering the aggregated data. At present the site has 1500 conditions. Prior to
April 2011 there were 20.
To create a clinically relevant research platform, PatientsLikeMe uses structured
surveys to collect patient-reported data. Novel treatment, symptom and condition
data enter the “User Voice dashboard” where it is reviewed and curated to assure
data integrity. They receive around seventy-five ”user voice” entries per day. Some
may already be in the system. For example, there could be a spelling difference, or
the patient could have entered two concepts together, such as “pain and depression”.
These are split so the patient can monitor each separately and each can be aggre-
gated for research purposes.
All clinical data is coded in the background using standardized terminologies.
Symptoms and side effects are coded into SNOMED-CT and MedDRA, a medical
terminology used to classify adverse events associated with the use of biopharma-
ceuticals and other medical products. Diagnoses are coded into ICD-10, the next
generation of this coding system that is not yet widely used in the US. Despite this
high degree of coding, as much as possible the “patient voice” is maintained.
PatientsLikeMe points out that patients self-manage around 90% of their care.
As shown in Fig.
6.2
, the site helps patients put their conditions in context, organize
the status of symptoms, treatments and side effects and prepare themselves for a
clinician encounter through the use of a clinician visit sheet. They try to help patients
answer the question “given my status what's the best outcome I can hope to achieve
and how do I get there”? They offer patients connections to other similar patients
and patient communities
PatientsLikeMe is perhaps best known for a dramatic research study initiated by
the patients themselves. After a report from Italy suggested that Lithium might slow
the progression of their disease, a group of patients with amyotrophic lateral sclero-
sis (ALS) decided to experiment on their own with lithium carbonate treatment.
They came to the site and said, “we're using lithium and need support to find the
effects.” In 12 months using the tools on the site patients showed that Lithium had
no effect on their disease progression. [
6
] Nothing I know of more dramatically
illustrates the potential for patient participation in their own health and in clinical
research through making data more accessible and easier to share, aggregate and
analyze.
Patient Portals
: This is a concept that preceded the Personal Health Record (PHR)
and is still around today. McKesson Provider Technologies, whose RelayHealth
division is a leader in this space, has a patent for an electronic method of communi-
cation between healthcare providers and patients involving personalized web pages
for doctors and their patients. They may have been the first to offer such a service.
The basic idea of any patient portal is a web page that facilitates communication
between patients and their health providers. Potential functions include secure
