Electronic records may only improve access to documentation of incomplete assessment and inappropriate treatment and may not represent true quality of healthcare that reflects respect for the patient, comprehensive follow-up and medical responsibility for individual patients and more penetrating investigation of the root causes of problems by teams of health professionals who have a professional relationship with a patient. This was from an anonymous peer reviewer of one of our papers in BMJ where we had talked about the role of informational continuity.
This is exactly what we are trying to address in our PaJR groups where we have transformed the dyadic relationship between single patient and doctors to provide a team of doctors for one single patient with comprehensive care centred around their requirements. (More about this transformation of the dyadic in our past communication here :
It's a work in progress but we thought we need to put certain things out here for public consumption about our PaJR workflow :
INTRODUCTION :
Key considerations for the translation of the con cept of the
"Patient Journey Record Systems (PaJR): The Development of a Conceptual Framework for a Patient Journey System. In R. Biswas, & C. Martin (Eds.), User-Driven Healthcare and Narrative Medicine: Utilizing Collaborative Social Networks and Technologies (pp. 75-92). Hershey, PA: Medical Information Science Reference. doi:10.4018/978-1-60960-097-6.
The key concept lies in the use of regular patient reported outcomes to locate the phase of illness in a
patient journey.
WORKFLOW and RULES :
Conversational learning transcripts--
PaJR buy in--
PaJR Team member and coordinator to a patient and potential new PaJR team member around whom the entire PaJR group (consisting of health professionals and expert patients or patient advocates with their own PaJR groups) is centered --
Would you like to be added to one of our PaJR groups where, a team will be centered totally around your care (including your current health issue)?
This is a current healthcare project where we are reversing the traditional dyadic doctor patient relationship to multiple doctors and a single patient relationship!
Do share your whatsapp number if interested.
Patient : please do not do this.
I feel very uncomfortable dealing with my physical problems. You can always discuss me as a patient keeping me anonymous.
PaJR Team member : Yes I forgot to mention that in each one of our patient groups we keep the patients deidentified and anonymous and most of them do interact also sharing their regular updates on the group largely as their own advocate not letting the group know that they are actually the patient. This ensures no online traces of their identify and all group members take utmost care to preserve the patient's confidentiality.
It's all designed for the patients to take charge of their own healing and become better informed about all the nitty gritty science of their illness journey. A deidentified online accessible case report of the patient can be created by one of our trained students as the first step. We need a signed informed consent from the patient to go ahead with this and it can be downloaded in multiple languages here : http://medicinedepartment.
Patient : If it is anonymous, I have no problem. In any case, if you shared details with your colleagues without my knowing about it, I would never have an issue
PaJR Team member :
As the patient's advocate you will be addressing yourself in the third person everyday in the PaJR group and you will make sure that your privacy and confidentiality is preserved through deidentification and the group members will also make sure that the patient is deidentified as anyway the group members shouldn't be having a clue as to who the actual patient is other than the ones who have created the patient group.
One of our students will phone you to create your deidentified case report before you start sharing the daily patient details in the PaJR group
Your daily sharing will make the PaJR team anticipate a major problem well ahead in advance such as a sepsis resulting from a local pathology that can be identified as to what level it's brewing. For example is the anal fistula in our patient going to spread systemically to produce a sepsis cascade manifested in fever (among other subtle early indicators noticeable in what the patient shares daily in the PaJR group)?
Daily sharing of details in our PaJR groups primary involves sharing the patient's daily input and output.
Inputs in a patient's journey are the individual's energy inputs, shared regularly as sensory experiences of the patient, sometimes even in images (such as daily images of food, fluids and deidentified locations that they may like to share as their visual sensory inputs other than their daily narratives (including poetry) on their illness journey such as the narratives you have been sharing already in emails but it will be done in third person without the advocate's giving away the fact that she could herself be the patient).
Outputs in our patient journey are essentially the individual's energy outputs, reflected in the patient's motor activities such as exercise (that may even be as simple as sitting and standing), urine output, stool output and any other organ system output relevant to the patient's case.
In our PaJR groups you can expect to see and learn to cognitively handle a lot of biological (often disgusting for a large majority of people) images that can go beyond average cognitive handling capacity as they are far beyond what one may imagine experiencing in the usual biology wet labs but what unifies them and perhaps makes everyone worth take the risk of joining these groups is that they are very very human images and not only project human vulnerability like one may have ever experienced before but also offers solutions from the PaJR's collective cognition that again one may not have had the opportunity to experience before.
Overall it's one hell of a learning opportunity for all humans (citizen scientists even future citizen astronauts) although all the humans in the group have to abide by the rules and prime among those are patient deidentification and patient confidentiality with open access sharing and updating of all deidentified data in the individual's case report as long as they are not sensitive information that the patient would feel uncomfortable about even if deidentified.
All data in the case report would be verified by the patient for sensitivity and confidentiality before it's shared as an open access case report.
Let me know if when you are ready. I can begin by just adding you to some PaJR groups for you to assess how the patient advocates there share regularly. These would be like level 1 groups and not the one's that are disgusting as that would be level 2.
Patient : Sure, go ahead.
Right now my worries are wearing me out. The swelling and pain are progressively getting worse.
I am finding it difficult to decide what to do.
PaJR team: Meeting an understanding physician or surgeon in your location for them to review the area of pain and provide their inputs would be very useful. You have already done that and can revisit the local doctor if when necessary, which will also be directed by our PaJR Team when ever their collective clinical judgement mandates.
One of our patients used a mobile phone to capture for us the physical condition of his peri anal pain area by filming his bottom while squatting in the toilet and we were stunned by the insights from the images that we ourselves had seen while examining him in a different position (obviously would be difficult for anyone to peer into a bottom when someone is squatting).
If you think you would be curious to see those images here: https://
Patient : I do not want to see the images. But I can send my image, if that will help me. Not exactly how you asked, but perhaps lying on the bed. Gosh, you guys! :-)
Incidentally, I am a bit better now, I do not know how. The pain is much milder.
PaJR regular conversational decision support transcripts in certain PaJR updated individual case reports here : https://ssahamedicalcases.
Further reading:
History of PaJR and UDHC :
Scholarship of integration :
Further reading on Medical Cognition:
Further reading on deidentification and anonymity :
Recent conversational PaJR update :
November 2023:
AB in NPC group :
Above figure available open access here :
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