Helping Patients With Chronic Disease: How Not To – Part 2

Following my latest post, I reached out to an expert in privacy as well as a primary care physician for some feedback. Below I share with you a “quick ‘n’ dirty” fix – I don’t think this is a good solution – and address some of the concerns and feedback I’ve received.

Quick ‘n’ Dirty Workaround:

Here it is is: ask your family physician to request all your records from the different providers. They do not get charged for it. Whether your family doctor charges you is another matter. Also, how is this efficient for the patient and the primary care physician?

Feedback & Concerns:

Most of my examples are anecdotal and I have not used real evidence:

I prefaced the post that most of the information came from my master’s project. In this project I had a methodology on how I will search, classify, synthesize and communicate the information. While it may seem like I have not used any evidence in this post, I have reported from evidence-informed knowledge. In hindsight, I should have incorporated more of the evidence in the actual post as opposed to simply reporting it. Having said that, I think the best way to “drive-home” a point is through anecdotal examples.

The law allows you free access to your PHI:

Indeed, the law does and I did not state otherwise. It is at the discretion of the custodians that hold your records whether they charge you or not. In my original post, I point out that as a patient requesting to obtain my information, my perception – not reality – is that I do not own my records, because I am being asked to pay to get them. Although “access” from the law’s perspective isn’t the issue, obtaining the records is and hence this creates a barrier that impedes “access” to information. Although I do not have any evidence to back the following claim, I think this barrier to obtaining your records can create more health problems for the patient (e.g. anxiety, frustration). Not only are you managing your life and career, you also have to manage your health. If you’re missing a key piece, how can you complete the puzzel?

The claim that only those which chronic disease should have free access creates an inequitable argument since there is no evidence of the value for such an inequality:

By law, we have ascertained that everyone has free access to their PHI. The argument then is applicable to custodians of PHI who charge the fee for individuals wishing to obtain their information.

I agree that my argument may seem inequitable to patients who do not have a chronic condition. However, there is no evidence for the value of obtaining PHI for healthy patients, versus the value in empowering patients with chronic conditions to better manage their care is evidenced through studies using various types of interventions.

 The above mentioned claim creates a privacy issue, as the individual with a chronic condition  – any one for that matter – would have to disclose their health information.

I agree with this statement. In my opinion, it goes to reinforce my belief that our system in Ontario does not revolve around the patient. How do you manage this aspect? I do not know. It would be interesting to see how the flow of information will be designed to deal with this particular issue (NB: explore Privacy by Design). My inclination would be to find the root-source of the information. Where and who in the patient’s circle of care captured this information? Can the patient be qualified – by a clinician – at the point of information capture? How do you systematically enable and ensure that the patient does not perceive or face barriers in obtaining their information? How is this access communicated and implemented across the healthcare continuum without compromising the patient’s privacy? Does the patient care to remain anonymous or not?

How do you define “chronic disease”?

A good place to start is Ontario’s chronic disease prevention and management framework (see prior blog entry). It does a great job in defining “chronic disease” and thoroughly identifies factors – health determinants – that attribute to chronic diseases in individuals, in addition to presenting a strategy on moving forward.

Who then is the arbiter of what constitutes sufficient justification for such free access? What is the threshold of severity?

Fantastic questions to which I answer: It depends, as a myriad of questions have to be asked.

Who’s point of view are we taking? What are the desired outcomes? What does evidence – quantitative & qualitative – inform us? What is the condition that is being considered? What political/economical forces are at play?

I can only speak to populations with rare genetic disorders, as that was the primary focus of my research. It is worthy to note that some people have the propensity to develop certain conditions (family history), however I believe those individuals fall under the education and prevention group, as opposed to individuals with a genetic mutation (verified through genetic testing) who will require ongoing management of their health.

What’s the biggest take away? We need to have a discussion – probably many.

Will our discussions accomplish anything? Depends on who’s playing in the sandbox.

One thing is for certain, something has got to give.