Helping Patients With Chronic Disease: How Not To

Let me preface that the information in this post results from my master’s  report. Should you wish to get more information and/or references, please contact me at

Since 2007, Ontario released a revamped framework to manage patients with chronic diseases. The frameworks calls for various aspects of clinical and non-clinical interventions that cover clinicians, allied health professionals, patients and other healthcare providers, to collaboratively help these patients  achieve better health outcomes.

One of the concepts in enabling healthier outcomes is the notion of access to health – the ability for individuals to attain readily available services they require conveniently.

For patients with chronic diseases, a key component for them is to access their personal health information (PHI). This is most true for patients who are afflicted with rare genetic disorders.

Patients with rare genetic disorders – or individuals who care for them – become managers of their conditions. This could be due to the fact that there is not enough resources for information due to the disease’s rarity, or lack of infrastructure to support their needs. These patients resort to other types of knowledge sources such as online communities and share the knowledge they have gained from personal experiences. Literature shows that in some cases, individuals rely on said advice more than other resources.

In Ontario, legislation allows an individual to request their personal health information from the custodians/stewards of the information. Examples could be your family doctor, your records in the hospital, so on and so forth.

Have you tried to request your information? I have.

I requested my information from Hamilton Health Sciences (HHS). I was notified that the first 10 pages will cost $20 and $0.25 for every subsequent page. These charges – of coarse – were to offset any printing costs and such.

That seemed rather odd to me and here is why:

  • Ownership: The information held by these institutions belong to me. They simply act as stewards/custodians of the information on behalf of the patient.
  • Costs: Yes, it is understandable that someone will have to go out of their way (amidst 100’s of daily requests) to locate my chart, copy the information and mail it – I get that – and this costs money.

I asked if the fees can be waived. The answer to that was to speak with a manager. I left the manager a voicemail and got a call from her the following week.

After exchanging pleasantries over the phone, she informed me that the fees cannot be waived. I asked about patients with chronic diseases who require their information. She did not budge.

My next inquiry was with regards to patients who cannot afford to pay the fee. Her reply was to narrow down the time period of the request, therefore reducing the cost, as they do not discriminate against patients who can and cannot afford to pay for these fees. At that stage, I thanked her and ended our call.

What are the messages that this policy sends and what are its implications?

  • Ownership: My perception – not reality – is that I don’t own my information. Having personal health records that tap into hospital systems may potentially solve this issue, but it is not an inclusive solution and will only work if the appropriate policies support it. Having said that, I asked for my information and not copies. Whether they scan or print my information for their own records – technically – shouldn’t matter, however, the patient should not bear the cost of having their own health information with them – with some exceptions that are discussed below. In this case, accessibility is an issue.
  • Costs: Fees associated with obtaining your records create a barrier for individuals who need this information. Only individuals who have enough discretionary income can afford to obtain their records. Based on determinants of health and other studies, the biggest populations with chronic diseases is our growing elderly population and disadvantaged individuals.
  • Technology: I’m a strong advocate for individuals to have personal health records (PHR). However, individuals who do not have access to smart-phones/computers and subsequently their PHR, face yet another barrier. Even in an ideal world where everyone’s records are in a PHR, I.T. is simply an enabler of the solution and should the supporting policy be lacking, then having PHRs is pretty useless – I think.

Does this policy discriminate?


Does every patient require to obtain their information?

Probably not, however, it is their right should they wish to do so.

Should a healthy patient obtain their information at no cost?

I don’t think so. Also, I don’t think healthy patients perceive managing their health as a priority. Sure, they are taking care of themselves and undergoing preventative screening and such, but it would be different in the case of a diabetic v.s. a non-diabetic person.

Should every patient with a chronic disease obtain their information at no cost?

Absolutely. It is an important step in enabling and empowering them to become an active participant in managing their health.

Clearly it is not as simple as black and white. Which types of diseases would classify for free – not costing the patient – access?

Given that we are moving towards a more “patient-centric” model, why are there barriers for patients with chronic diseases?

I hope this post inspires and opens the doors to explore opportunities and engage in dialogue.  As a patient – yes, You – what do You think?

**Update: I’ve received some fantastic feedback from subject matter experts, and will incorporate it into this post hopefully by the weekend. Look forward to it!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s