Patient-controlled medical records: new technology, new problems

There are two reasons I love coming to work every day. First is the opportunity to help patients around the world take control of their health care. Over the next few months, I will be blogging about some of these patients, and the problems that Patients Know Best helps them solve. And second is the intellectual challenge.

Because what we are doing is hard. By creating the world’s first patient-controlled medical record, we are helping to transform the health care system. This is wonderful, as it benefits all patients, but it is hard, as it means rethinking every process. Every day, we have to figure out the answers to some fascinating questions.

For example, patient control means data are shared ethically, at every step of the way clearly due to the patient’s informed consent. But it also requires planning well in advance to manage the encryption and security that move data at the patient’s behest. How do you allow researchers to ask questions across millions of patients’ medical records when each of these patients has encrypted their records using a different key, and none of the keys are available to the researchers?

Control also means patient responsibility. When someone forgets their password to a web site, they ask the administrator to reset the password. But when the patient is the administrator of their account on Patients Know Best, how do you allow them to reclaim it?

And of course the point of control is the contribution that the patient makes to his or her health. This is the contribution that makes the patient part of the medical team, rather than simply a recipient of its care.

But because most patients have never seen their records before Patients Know Best provided them, few patients already have the skills to fully contribute to the work of medical professionals. So our software must explain the data to the patient, train him or her to use it, and enlist the help of others like family and friends who take on responsibilities for the patient. How do you give patients understanding, the skills, the network, and above all the confidence to say that they know best about their health?

4 comments

  1. ???? I dont understand the worry about passwords..could a person have several passwords so if one is forgotton another could be used – up to a limit before having to register again? Re sharing data – is it envisaged that the person themselves only will hold the records and have the right to ‘allow’ GPs and others to access them?
    |How would a person open a discussion about beoming a meber of Patient Knows Best without wondering if the title even will antagonise the clinician? Will there be help to suggest ways of broaching it? When you say software must explain the data does this data mean information about their health in their records or how to use the data/technology?

  2. Thanks for the questions! Quickie answers:

    Could a person have several passwords?” – every additional password is an additional security hole. And for patients, it is easier to remember one difficult to guess password than to remember several difficult to guess passwords. (And all the passwords have to be difficult to guess, to ensure security.)

    Is it envisaged that the person themselves only will hold the records and have the right to ‘allow’ GPs and others to access them?” – yes, this is a copy of the records that the patient controls, and this control is a good thing. Clinicians are frequently unable to share information about the patient because they need consent. Same goes for charities, researchers, social workers, and anyone else the patient might benefit from sharing information with, if given the choice. But once the power is handed to the patient, the data sharing can begin and the quality of care goes up. This is why so many doctors come to us asking for PKB: they see it as the best way to deliver high quality care.

    How would a person open a discussion about beoming a meber of Patient Knows Best without wondering if the title even will antagonise the clinician” A lot of people warned us that the name would antagonise doctors. But we have found that the more experienced, skilled and senior a doctor is, the more they like they name. It is because they are so knowledgeable that they are comfortable with the knowledge of others, i.e. the patient. This is why doctors at Great Ormond Street Hospital, UCL Hospital and Imperial College Hospital were the first to embrace the system.

    We then found that other doctors like to copy these doctors as they are the best in the profession.

    Will there be help to suggest ways of broaching it” Yes, we are launching a web site about this soon that is supported by several patient charities and Channel 4. In the meantime, Thalidomide Trust and each of the doctors who use PKB are sending letters out to the patients that the patients can show to their local doctors. The letters explain the importance of using Patients Know Best for delivering high quality care and ask the doctor to use the software (free of charge) with the patient.

    When you say software must explain the data does this data mean information about their health in their records or how to use the data/technology” We do have good manuals that explain how to use the technology, but what I meant in the blog post was that the software must explain to the patient what the medical data means. Because this our mission: we exist so that patients know best.

    1. I have alreaqdy requested paper records for myself and encouraged people to access theirs through leaflets etc but but If people decide not to allow information to be put on electronic summary care records can they still use PKB? If they have decided to allow only parts of their information to be shared can they state that they only want some parts of their record to be downloaded on PKB system?

  3. thanks very much. would it be possible to make a list of doctors/practices in different areas who support PKB so that people could register with them?

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