1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
New Exercise Study Brings Both Illumination and Questions
Simon McGrath looks at new objective evidence of abnormal response to exercise in ME/CFS patients, and the questions that researchers are still trying to answer ...
Discuss the article on the Forums.

Keeping track of your blood work over time...

Discussion in 'General ME/CFS News' started by Kati, Feb 23, 2010.

  1. Kati

    Kati Patient in training

    Messages:
    1,829
    Likes:
    899
    Do any of you use an online program to keep track of your blood tests? I was actually suggesting to Patients like me to think of a system to keep bloodwork results over time, along with treatments and symptoms, that would be ideal. As you may know if you have a binder of your own blood test, it is hard to sort through them trying to find where the date of the test is on the page and trying to read the stuff...

    Anybody has a suggestion? ( I am hoping not having to learn excel here)
  2. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    286
    Massachusetts
    Hi Kati,

    I agree that Patientslikeme would be ideal but it would be a substantial investment for them. Having worked for a healthcare IT vendor in the past, I know that most systems these days are built around a relational database where results are stored and retrieved quickly. Data integrity is of huge importance. Retrieving data quickly and being able to compare data across patients is extremely valuable but also costly.

    In the healthcare IT world, most databases are optimized for high transaction volumes (orders in, results in, admissions, etc.) for quick response time. The reporting requires extraction of data from the databases. Some databases are configured for analytical processing instead of transaction processing so the ability to pull reports and compare data is much easier.

    Personal Health Records are already available from Microsoft, Google, and a few other vendors. I think Microsoft's is the Health Vault or Amalga. I can't remember what name Google's goes by.

    I've not used either one but I've used Excel more than I care to. Some of the personal health records are available free via some healthinsurers as well. I know one Boston hospital is already using Health Vault. I can check into this more and see what else I can come up with!

    ~JT
  3. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    286
    Massachusetts
    Here is more information but it may be TOO MUCH!

    Personal Health Records by Dr. John Halamka

    Monday 14 September 2009 - Boston The exact definition of a personal health record (PHR) is still evolving, but personal health records hold the promise to make patients the stewards of their own medical data. PHRs may contain data from payer claims databases, clinician electronic health records, pharmacy dispensing records, commercial laboratory results and patient self-entered data. They may include decision support features, convenience functions such as appointment making/requesting referrals/medication refill workflow, and bill paying. However, most PHRs are not standards-based and few support an easy way to transport records among different PHR products.

    The current landscape of PHRs includes four basic models:

    Provider Hosted Patient Portal to the clinicians's Electronic Health Record - in this model, patients have access to provider record data from hospitals and clinics via a secure web portal connected to existing clinical information systems. Examples of this approach include MyChart at the Palo Alto Medical Clinic, Patientsite at Beth Israel Deaconess Medical Center, and MyChart at the Cleveland Clinic. The funding for provider-based PHRs is generally from the marketing department since PHRs are a powerful way to recruit and retain patients. Also, the Healthcare Quality Department may fund them to enhance patient safety since PHRs can support medication reconciliation workflows.

    Payer Hosted Patient Portal to the payer claims database - in this model, patients have access to administrative claims data such as discharge diagnoses, reimbursed medications, and lab tests ordered. Few payer hosted systems contain actual lab data, but many payers are now working with labs to obtain this data. Additionally, American's Health Insurance Plans (AHIP) are working together to enable the transport of electronic claims data between payers when patients move between plans, enhancing continuity of care. The funding for payer-based PHRs is based on reducing total claims to the payer through enrollment of patients in disease management programs and enhancing coordination of care.

    Employer Sponsored - in this model, employees can access their claims data and benefit information via a portal hosted by an independent outsourcing partner. An example of this is the collaborative effort of Pitney Bowes, Wal-Mart, Intel and others to offer Dossia, an open source application which enables patients to retrieve their own data. The funding for employer-based personal health records is based on reducing total healthcare costs to the employer through wellness and coordination of care. A healthy employee is a more productive employee.

    Vendor hosted - several vendors offer products which serve as a secure container for patients to retrieve, store and manipulate their own health records. Microsoft's HealthVault includes uploading and storage of records as well as a health search engine. Google Health supports uploading and patient controlled medical record sharing. The business model for these PHRs is generally based on attracting more users to advertising-based websites, although the PHR itself may be ad free.

    All of these models will be empowered by data standards for demographics, problem lists, medications, allergies, family history, the genome, labs, and text narrative. The Health Information Technology Standards Panel (HITSP) completed an initial set of interoperability specifications for demographics medications, allergies and advanced directives in 2006. In 2007, it completed problem lists, labs, and text narrative over networks and on physical media such as thumb drives and DVDs. In 2008, it completed family history and the standards required to securely transmit genomic information.

    Another aspect of interoperability is interfacing home monitoring devices such as glucometers, scales, blood pressure cuffs and spirometers to personal health records. At present, most patients using these devices must manually type results into PHRs or call them into a provider because of the lack of uniform data standards in devices, EHRs, and PHRs. In 2008, HITSP identified standards to ensure vital signs and glucose monitoring devices are interoperable. Continua is building a great foundation for this process by working with IEEE, HL7 and other SDOs to identify the most appropriate standards to support device interoperability and to identify gaps in current standards. HITSP and Continua will work collaboratively on standards selection in 2009 and beyond.

    Privacy and Security are critical to health data exchanges between PHRs and EHRs. Privacy is the policy which protects confidentiality. Security is the technical means to ensure patient data is released to the right person, for the right reason, at the right time to protect confidentiality. The US currently lacks a uniform private policy for clinical data exchange. Local implementations are high variable and some organizations use opt-in consent, others use opt-out. The personal health record can help address this lack of policy. By placing the patient at the center of healthcare data exchange and empowering the patient to become the steward of their own data, patient confidentiality becomes the personal responsibility of every participating patient. Patients could retrieve their records, apply privacy controls, and then share their data as needed with just those who need to know. Since policies are local, the security standards built into PHRs need to be flexible enough to support significant heterogeneity.

    HITSP has selected the security standards for the country which include audit trails, consent management, role-based access control, federated trust, and authentication. Personal Health Record vendors and device manufacturers will be empowered by these standards, which outline best practices for securing patient identified data transmitted between systems. Once patients trust the security of the network used to exchange data, adoption of personal health records and data exchange among payers and providers will marketly increase. Eventually, PHRs could also hold consent information, recorded via the HITSP Consent Management Interoperability Specfication, that can provide an easily queriable source for patient health information exchange preferences.

    The evolution of today's paper-based, non-standardized, unstructured text medical record into a fully electronic, vocabulary controlled, structured interoperable document shared among patients and providers will be a journey. Standards are key and recent work in this area now provides the foundation for personal health records. Security technology exists today that is good enough. Early experiences with PHRs demonstrate high patient satisfaction, reduced phone volume to provider offices and less litigation by patients sharing medical decision making with their clinicians. The time to implement PHRs is now and the only barriers are organizational and political, not technological.

    by
    John D. Halamka, MD, MS
  4. bjsmith

    bjsmith

    Messages:
    7
    Likes:
    0
    I am interested in this as well. Currently I have all my lab work in a 3 inch binder, sorted in chronological order. It is clumsy when taking it to doctor appointments -- mine won't even fit in my backpack. I have 15 years of medical records though, so I'm sure it would be torture to enter all of that into an online database.
  5. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    286
    Massachusetts
    Personal Health Records - research started....

    I just emailed John Halamka. He's HUGE in the healthcare IT industry. Hope I get a response. I also sent a private message to someone at Patientslikeme (PLM). I've been suggesting a lot of collaboration between PLM and Boston/Cambridge based hospitals, high tech companies, and research. Unfortunately, PLM has so many opportunities and they can't pursue them all.

    More on John Halamka can be seen at this link:

    http://www.blogger.com/profile/04550236129132159307
  6. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    286
    Massachusetts
  7. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    286
    Massachusetts
    Flash Drive PHR

    Here is another option.... one you can store on your flash drive.

    This was initially developed for parents of children with chronic illnesses.

    http://www.patchnetwork.org/phr
  8. JT1024

    JT1024 Senior Member

    Messages:
    534
    Likes:
    286
    Massachusetts
    Personal Health Records on PLM

    Here is a response I received from Tim at PLM:

    Hi JT. This is something we've wanted to do for a while. We have implemented this in our newest community for transplants patients (not yet announced, but it will be next week!) where creatinine and other tests are so important. Our approach is usually to test the implementation in one site, and when we're happy with it roll it out to our other communities.

    Thanks for the feedback,

    Tim


    I've asked if is being built by PLM or if they are utilizing another resource.

    More to come! ~ JT

See more popular forum discussions.

Share This Page