Abstract:
A computerized system allows intercommunication of patients with respect to the treatment of their diseases. This system includes an electronic medical record database providing electronic medical records of a given set of patients as developed by healthcare professionals and linked to an anonymous identifier for each patient and a set of terminal devices accessible to the patients allowing for the electronic exchange of information through a display and data input device. A server system connects the anonymous medical record database and the terminal devices and executes a stored program to: (1) allow an authenticated connection by a given patient to the server system through a terminal device and associate the connection with an anonymous identifier; (2) permit authoring by the given patient of a patient site viewable on a terminal device incorporating medical records from the anonymous medical record database associated with the anonymous identifier; and (3) identify to the given patient other patient sites for other patients having shared medical conditions according to a predetermined clustering of data of the anonymous medical record database.

Description:
CROSS REFERENCE TO RELATED APPLICATIONS 
       [0001]    This application claims the benefit of U.S. Provisional Application No. 61/096,709, filed Sep. 12, 2008, hereby incorporated by reference in its entirety. 
     
    
     BACKGROUND OF THE INVENTION 
       [0002]    The present invention relates generally to electronic medical records systems used by health care providers and, in particular, to a system promoting patient communities for support and education based on verified medical information. 
         [0003]    Traditionally, a patient&#39;s source of medical information has been largely limited to his or her personal physician, articles in the popular press, and the advice of friends and relatives. The Internet has greatly increased the variety of medical information available to the public, providing websites dedicated to medical information of particular medical conditions providing information and resources to visitors about those conditions. These websites expand on articles that could have been found in the popular press. In addition, the Internet has provided “medical” social networking sites allowing patients to exchange views and information about their medical condition and their management of their health with respect to their condition. Websites like PatientsLikeMe.com provide a framework allowing patients with particular medical conditions to connect electronically in “social network” type environments roughly analogous to conventional social networks such as Facebook.com and MySpace.com. 
         [0004]    One problem with such medical social networking sites, arising from a problem endemic to the Internet generally, is that the information provided by the site cannot be wholly trusted. While it is likely that most participants on such sites endeavor to provide accurate information, the participants may not fully remember, understand, or accurately describe their treatments or outcomes. Generally, the information disseminated by such sites is subject to a “self-selection” bias toward information from individuals who choose to participate in the site and who decide to be forthcoming about their problems and successes. And while it is likely that most participants in such medical social networks are genuinely affected with the medical conditions discussed, such sites present a strong temptation to marketers to market products under the guise of being of a fellow patient. 
         [0005]    These social networks can be very helpful in providing psychological support to those who have a particular medical condition; however, even this benefit is weakened if there is significant doubt about the identity of the other participants. And while the information gleaned from such sites may be useful on an anecdotal basis, it cannot rise to the level of scientific data. 
       SUMMARY OF THE INVENTION 
       [0006]    Patients represent an untapped resource in their zeal to learn about their diseases and treatments and to promote the benefit of others in the same position. Nevertheless, the medical community is currently far from being able to effectively utilize the benefits of this potential resource. 
         [0007]    The present inventors have recognized that a variation on the medical social networking system could enlist this community to greatly increase information sharing both among patients and doctors. Critical to unleashing this sharing process is that the patients be able to present verifiable medical information about their conditions. Under a community with verified patient medical information, the level of trust and quality of information transfer is substantially increased, providing a more satisfactory experience to the patient and potentially allowing improved information to be attained by healthcare professionals as well. 
         [0008]    In one embodiment, the present invention therefore provides a computerized system allowing intercommunication of patients with respect to the treatment of their diseases. This system includes an electronic medical record database providing electronic medical records of a given set of patients as developed by healthcare professionals and linked to an anonymous identifier for each patient and a set of terminal devices accessible to the patients allowing for the electronic exchange of information through a display and data input device. A server system connects the anonymous medical record database and the terminal devices and executes a stored program to: (1) allow an authenticated connection by a given patient to the server system through a terminal device and associate the connection with an anonymous identifier; (2) permit authoring by the given patient of a patient site viewable on a terminal device incorporating medical records from the anonymous medical record database associated with the anonymous identifier; and (3) identify to the given patient other patient sites for other patients having shared medical conditions according to a predetermined clustering of data of the anonymous medical record database. 
         [0009]    It is thus one object of the invention to fundamentally transform medical social networking by allowing accurate and verifiable medical data and participants. 
         [0010]    In a related embodiment, the invention provides a set of terminal devices accessible to the physicians allowing for the electronic exchange of information through a display and data input device and the server system communicating between the anonymous medical record database and the terminal devices to: (1) allow a searching by a given physician of the anonymous medical record database according to search criteria entered by the given physician to provide a search result of patients; and (2) allow communication by the given physician with at least one patient&#39;s physician for a patient in the search result using the anonymous identifier to the patient&#39;s physician. 
         [0011]    It is thus one object of the invention to greatly improve the quality of information transfer among patients in a way that promotes a general benefit to the medical community. 
         [0012]    These particular objects and advantages may apply to only some embodiments falling within the claims and thus do not define the scope of the invention. 
     
    
     
       BRIEF DESCRIPTION OF THE DRAWINGS 
         [0013]      FIG. 1  is a block diagram of the system of the present invention providing medical social networking among patients based on actual electronic medical records; 
           [0014]      FIG. 2  is an example patient webpage generated using the system of  FIG. 1  and incorporating medical record data; 
           [0015]      FIG. 3  is an example cluster display accessible by the patient from the webpage of  FIG. 2  providing the patient with a selection of predefined clusters based on the patient&#39;s medical records; 
           [0016]      FIG. 4  is an example cluster home page for a particular cluster permitting a search of cluster members by a patient and providing analysis tools for the patient and access to other cluster-specific content; 
           [0017]      FIG. 5  is an example physician page providing for more sophisticated search tools for physician searching and analysis of the anonymous medical record data; and 
           [0018]      FIG. 6  is a logical diagram of the services and data structures used by the present invention. 
       
    
    
     DETAILED DESCRIPTION OF THE INVENTION 
       [0019]    Referring now to  FIG. 1 , the present invention provides a social networking system  10  for patients  12  and their physicians  14  using terminals  11  and making use of electronic medical records  16  holding medical data collected by healthcare professionals and thus having the highest level of trustworthiness. Generally the electronic medical records  16  will include many logical records  18  each associated with patient identification data  20  uniquely identifying a particular patient. The patient identification data  20  may, for example, be a number or an index value of the record  18  but is logically keyed to information allowing personal identification of the patient. 
         [0020]    The data fields  19  of the electronic medical records  16  may include, for example, the patient&#39;s name, age, gender, as well as medical information such as height, weight, blood pressure, medical history, the results of lab tests, diagnoses by physicians, treatment outcomes, and the like. Included in the data fields  19  is information normally not freely available to the public and protected under federal standards such as the Health Insurance Portability and Accountability Act (HIPAA). 
         [0021]    The physicians  14  may communicate with the electronic medical records  16  as is understood in the art during the course of their practice to update the data in the electronic medical records  16  and to use that data for their treatment of the patient informing diagnoses and recommendations. The electronic medical records  16  may provide for a primary physician field  21  indicating the patient&#39;s primary physician. 
         [0022]    In the present invention the data of the electronic medical records  16  may be received by an anonymizer  22  which copies the data from the electronic medical records  16 , on a periodic basis or as a “mirror” triggered by changes of the data of the electronic medical records  16 , into an anonymized database  23 . The anonymized database  23  also has records  18  with a one-to-one mapping with the records  18  of the electronic medical records  16 . The difference between the anonymized database  23  and the electronic medical records  16  is that the patient identification data  20  is removed and replaced with an anonymous patient key  24  that can only be interpreted by the patient  12  and his or her physician  14 . In a preferred embodiment, the anonymous patient key  24  is not linked to a personally identified patient by any information in the anonymized database  23 . 
         [0023]    In one embodiment, the anonymous patient key  24  may consist, logically, of a system-selected identification number  26  and a personal identification number (PIN)  28  provided to the patient  12 . This personal identification number may be created, for example, by the patient him or herself through an authentication process in which the patient  12  is provided with a temporary PIN  28 . The patient may then identify him or herself using the temporary PIN  28  and identifying information known by the patient, for example a Social Security number, to allow the patient to select an arbitrary PIN  28  to be used. It will be recognized that the system-selected identification number  26  and PIN  28  need not be contained in the record  18  but are logically linked to each record  18 . 
         [0024]    Patients who have not registered or obtained a PIN  28  will still have records in the anonymized database  23  but they will not be associated with PIN  28  indicating simply that the patient has not registered to produce a webpage or participate in medical social networking as will be described below. The anonymized database  23  include records from multiple medical institutions including from electronic medical records  16  having different record formats, the latter through the use of a remapping process of the type known in the art. 
         [0025]    The anonymized database  23  also provides for each record  18  an anonymous physician key  30  that, like the anonymous patient key  24 , cannot be linked to a personally identifiable physician by any data in the anonymized database  23 . Each anonymous physician key  30 , however, may be linked to an electronic contact address for that physician  14 , for example an anonymous e-mail address, by a contact database  32  mapping the anonymous physician key  30  to an electronic address and, in the preferred embodiment, separate from the anonymized database  23 . 
         [0026]    While in the preferred embodiment, the anonymized database  23  provides no data that would allow personal identification of patients  14 , as will be described in more detail below; in one embodiment, a separate one-way, cross-reference database  33  may be generated linking anonymous patient keys  24  to patient identification data  20  only for the patient&#39;s physician. In particular, this one-way, cross-reference database  33  will only be accessible to physicians and will only allow this cross-referencing process for a physician who is an attending physician for the particular patient. The one-way, cross-reference database  33  thus does not allow a general identification of patients. As will be described further below, the present invention allows data from the anonymized database  23  to be displayed on patient personal webpages  34  to be viewed by an authorized patient  12  and other authorized patients  12 . Importantly, because the system-selected identification number  26  is not visible during the cross-referencing process, the one-way, cross-reference database  33  does not allow even the patient&#39;s attending physician to identify the webpages of their patients or link a particular webpage to a particular patient, preserving absolute anonymity of the patient in these activities. 
         [0027]    Referring now to  FIG. 6 , the data of the anonymized database  23  may be processed by services in one or more server systems  36  (being electronic computers executing stored programs) to provide for viewing, sharing, and analyzing of the data of the anonymized database  23 . 
         [0028]    The server system  36 , as a starting matter, provides for a closed community of physicians and patients through the use of a high-level patient authentication service  38  ensuring that users of the server are both authorized and validated as to their identity. This authentication service  38  may be part of the process in which the patient  12  is assigned a username mapped to the system-selected identification number  26  and a PIN  28  as described above. Together the usernames and PINs  28  are stored in a globally accessible password database  39 . Services, as is understood in the art, are computer programs stored in computer readable medium for execution on an electronic computer. 
         [0029]    Referring now also to  FIG. 2 , for authenticated users, the server system  36  provides for Web authoring tools  40  to allow the patient  12  to generate a webpage  34 . The webpages  34  will be served by a Web server program  41  only to the closed community of authorized patients whose records are held in the anonymized database  23  to be visible only to patients  12  that have authentication service  38 . Such a closed web community, for example, may be enforced by short-term cookies placed on the patient&#39;s browser after registration is complete and a security checking process occurs upon the loading of each Web page. In this way, the pages may also be blocked from scanning by search engine spiders. 
         [0030]    The authoring tools  40  allow the registered patient to create a webpage in alias  42  (distinct from the username) and avatar  43  preserving absolute anonymity of the patients  12 . The alias  42  may be automatically checked to make sure it does not match another alias or an actual patient name unless it is the patient&#39;s own name. This latter feature allows the patient  12  to reveal his or her identity but prevents a patient  12  from assuming another patient&#39;s identity. In addition the authoring tools  40  allow selection of the contents of the webpage  34  as well as background colors and arrangement of content. For patients who wish to reveal their identity, the avatar  43  may be replaced with a photograph. This personalization maybe stored in a personalization file  44  associated with a web-page data space  46  for that webpage  34 . 
         [0031]    Referring still to  FIG. 2 , importantly, the webpage  34  may have a medical record data block  48  providing data directly from the anonymized database  23  associated with the particular patient  12 . This data maybe subject to translation from medical terminology to conventional English to improve its accessibility to the layperson, but is otherwise identical to the data stored in the medical record  16 . The translation may be done automatically, for example, through a translation table (not shown) providing standard synonym relationships. 
         [0032]    While the medical record data block  48  is indicated to be and verifiably contains actual medical information for the patient  12 , the patient  12  is provided with the ability to select what medical information (fields) to reveal. In this regard, the patient  12  may select data to display and implement that selection through an EMS filter  50  held in the web-page data space  46  of the webpage  34 . A data selection webpage (not shown) may be provided to the patient for this purpose allowing the selection of fields of data, for example, using a checkbox system. For participation in certain clusters, as will be described below, there may be an obligation to display certain information, and thus the patient&#39;s ability to filter using the EMS filter  50  may be constrained by membership rules as desired. These rules will generally require display of information only if the patient  12  wishes to join a particular cluster of patients and thus does not require the patient to reveal information as a general matter. The medical record data block  48  may include disease diagnoses, lab tests, treatments, and even patient demographic information. 
         [0033]    In the manner of a conventional “personal health page”, the webpage  34  also provides for patient-sourced data  52 . This patient-sourced data  52  may include other information about the patient including medical facts as well as personal information such as hobbies, geographic location, etc. The patient-sourced data  52  is stored in a data file  53  in the web-page data space  46 . 
         [0034]    Referring still to  FIGS. 2 and 6 , blog server  54  allows the patient  12  to place a personal blog  56  (text log) on their webpage  34  (or linked from the webpage  34 ) with blog text stored persistently in blog file  58  associated with the web-page data space  46  according to generally understood techniques. Again, the blog  56  may be viewed only by registered patients per authentication service  38  and patients who have obtained the address of the webpage  34  as will be described below. In addition the patient may display one or more charts  60  whose generation will be described. 
         [0035]    Referring now to  FIGS. 2 ,  3 , and  6 , once the patient has completed his or her webpage  34  it may be published in one or more clusters which the patient may join. Generally a cluster will be other patients having similar medical data who form a community for the patient  12 . The patient  12  may select multiple clusters which become a searchable term for the patient&#39;s webpage  34  and which can be displayed in a display box  62  at the top of the webpage through a series of cluster icons  64  linked to cluster definitions. 
         [0036]    The process of joining a cluster may be initiated, for example, by pressing a cluster button  59 , upon which the patient  12  is presented with a cluster screen  65  generated by a cluster service  63  in the server system  36 . Generally the cluster service  63  reviews registered patients and, through either or both of an automatic cluster analysis of a type known in the art, or by manual cluster creation by hospital staff, creates a set of clusters  66  indicated here as circular regions sized to show the number of members in the cluster and arranged roughly to show the relationship of the clusters  66  to each other with respect to similarities of underlying data. In this respect the clusters  66  are arbitrary groupings of multidimensional data in a multidimensional space where the multiple dimensions of data are data of the anonymized database  23 . Thus, for example, the cluster  66  may be simply patients  12  with a certain disease type, this being a cluster  66  along a single dimension. More typically clusters will look at multiple dimensions of: disease types, ages, and gender, with the patient  12  having the ability to choose between larger superset clusters (for example disease type) or sub clusters, (for example of age and gender). Combinations of diseases may also form clusters  66  and the patients  12  may be allowed to suggest or create clusters  66  of their own. 
         [0037]    Each cluster  66  may be selected by manipulation of a cursor upon which average cluster data  68  may be displayed to provide an indication to the patient  12  of the parameters of that particular cluster. In addition the cluster may be given a simple moniker  77  which may also be displayed in the circle of the cluster  66 . Generally, although the patient  12  may belong to multiple clusters  66 , in general, a patient may not belong to a cluster  66  unless the data of their record  18  of the anonymized database  23  fits the cluster definition. This data of the record  18  will be all the data of their record and typically not just the medical record data block  48 . In this way patients  12  within a cluster  66  can be assured that the other patients  12  of that cluster  66  share similar characteristics per the cluster definition. It is believed that this ability to verify cluster membership will provide a better sense of community and promote improved sharing of information. For this reason, the publication of the user&#39;s webpage  34  may be limited to members of the clusters  66  they have joined. The patient&#39;s  12  cluster memberships are stored in a cluster file  69  in the web-page data space  46  while the clusters&#39; definitions (being ranges of data within fields defining the cluster  66 ) may be stored in a cluster definition file  67  in the server system  36 , both globally accessible. 
         [0038]    Referring again to  FIG. 2 , a patient  12  may search for other users within a cluster that they have joined using a search tool invoked by search button  70  and invoking a search screen  72  generated by patient search service  74 . This patient search service  74  provides simple searching tools, for example text searches for text strings on a particular webpage  34 , within a selected cluster  66  displayed in a cluster control  75  in the corner of the search screen  72 . The cluster control  75  may be “pressed” allowing the patient  12  to cycle through his or her clusters  66 . Searching may be conducted preferably by a free text searching system having a text entry block  76  allowing the searched text to be entered along with field identifiers designating desired particular EMS fields  19  as well as values or ranges, or other elements (such as the blog  56 ). Generally, the search tools will permit searching only through the revealed medical record data block  48  for each webpage  34 , but will allow unrestricted searching of any revealed information on the webpage  34  such as alias  42 , blog text file  58 , and the like. The search results may be provided in a search result box  78  ranked in order of closeness of match according to well-known algorithms such as those used in conventional search engines. 
         [0039]    The patient search service  74  also provides data capture and charting utilities  80  allowing the patient  12  to capture search results and to present them in a tabular form or as various charts. For example, the patient  12  may wish to create a chart showing what medicines other patients in his or her cluster  66  are using, or how many members are of a certain age, or the like. Invoking one of the charting utilities opens a charting window  82  having controls  84  of the type well known in the art with respect to spread sheet programs to allow generation of the desired chart  60 . For this purpose, the search results of search result box  78  may be tagged, for example, with XML tags allowing ready classification. 
         [0040]    This generates charts  60  that may be imported into the patient&#39;s webpage  34  as described above. Generally the patient searches will be limited to clusters to which they belong, but not necessarily to patients that have registered or have created webpages  34 . Simple surveys may be created for other patients in the clusters  66 . 
         [0041]    Charts  60  may also be generated from patient source data, for example with the patient tracking his or her compliance with a program or symptoms or the like. The charts  60  may, in this case, provide a method for a patient to track his or her progress and communicate that progress to other patients who may be supporting them. Charts of this type, as well as questionnaires provided by a physician to a cluster  66 , may provide a valuable point of patient sourced data that may be used by physicians  14  as described below. Of particular importance may be patient-sourced information related to the patient&#39;s perception of outcome of their treatment. 
         [0042]    The chart  60  and the underlying data may further be captured and forwarded to a physician through an e-mail button  86  allowing the patient to share observations with his or her physician or other members of the cluster  66 . Multiple chart types may be captured and saved in a file in the chart data file  88  stored in the web-page data space  46  to be accessible at a later time by the patient through, for example, tabs  90  on the charting window  82 . Saved charts may be invoked through a patient-record button  92  or the like. 
         [0043]    The search screen  72  may also provide a connection to cluster-based information related to the displayed cluster  66  in the cluster control  75  through news button  94  providing a link to useful information prepared by the system administrator using content authorization tools  96 . This news may be recent developments in treatment, or helpful tips and suggestions targeted to members of that cluster  66 . This news may, for example, be used to recruit volunteers for studies and more information from members of the cluster. News headlines may be displayed on the charting page in a headline block  130  and this content may be stored in a cluster data block  100  as cluster content data  102 . The cluster page may also provide for cluster specific discussion groups and blogs  132  contained in cluster blog data  134  associated with cluster data block  100 . 
         [0044]    Referring again to  FIG. 2 , the patient may also press a contact button  91  to invoke a closed e-mail service  93  allowing the patient  12  to contact other patients using their aliases  42 . Particular patients may have other patients in aliases enrolled in a buddy list  95  displayed on the webpage  34  providing a fast method of contacting these patients through closed e-mail or visiting their pages and allowing other viewers to network through the patient&#39;s webpage  34  such as provides a list of associations. The buddy list may be stored in a file  97  in the patient&#39;s webpage web-page data space  46 . While not shown, an instant messaging type service could also be provided. 
         [0045]    The anonymized database  23  and the patient source data provide a tremendous opportunity to physicians to obtain additional information from a large cohort of patients. Thus, the server system  36  provides physician search tools  104  that may be invoked, for example, as shown in  FIG. 5  via a search page  106 . Generally this search page  106  will provide much more sophisticated search tools providing multifield search boxes  108  that may be linked in Boolean combinations within or outside of an individual cluster  66 . The revealed data records  18  may be exported to analysis programs or analyzed using charting and other statistical processing tools contained in the physician search tool service  103 . Each record  18  revealed in a search will be associated with a contact icon  110  allowing the physician to contact the physician of the particular patient without knowing the patient&#39;s identity. Contact icon  110  employs a physician closed e-mail service  112  using the contact database  32  and provides an e-mail to a physician of the anonymous patient using the closed e-mail service  112 . This e-mail permits the searching physician to contact the physician of a patient identified in the search allowing the searching physician to ask for more information about the patient in a physician-to-physician exchange. The physician receiving the e-mail is provided a link managed by the closed e-mail service  112  allowing the physician receiving the e-mail to identify the patient who is the subject of inquiry by name without revealing the system-selected identification number  26  or the patient&#39;s alias  42 . In this way the anonymity for other patients  12  is preserved as well as the anonymity of the particular webpage  34  for the patient being discussed. The closed e-mail service  112  may be useful for a doctor looking for treatment options for a patient having an unusual set of conditions allowing the physician to identify other physicians who may have useful information about patients under their care. Note that at no time does the patient&#39;s physician need to reveal the patient&#39;s actual identity providing improved privacy for the patient. It should be emphasized that for many interesting types of studies, the anonymized database  23  will be sufficient since it contains validated medical data. 
         [0046]    A physician may also register in the same manner as a patient  12 , but for a physician-only cluster  66 , allowing the same tools available to the patients to be also provided to the physicians in a separate section not accessible by the patients thus allowing physicians to provide physician interest groups per clusters of diseases defined according to the patient data, and to prepare blogs and the like for the sharing of information. Of course, a physician may also register within the patient clusters as a physician (and thus not need to reveal their own medical data) to be available to the cluster as a resource to ask questions or the like. 
         [0047]    It should be understood that the invention is not limited in its application to the details of construction and arrangements of the components set forth herein. The invention is capable of other embodiments and of being practiced or carried out in various ways. Variations and modifications of the foregoing are within the scope of the present invention. It also being understood that the invention disclosed and defined herein extends to all alternative combinations of two or more of the individual features mentioned or evident from the text and/or drawings. All of these different combinations constitute various alternative aspects of the present invention. The embodiments described herein explain the best modes known for practicing the invention and will enable others skilled in the art to utilize the invention.