Guest blogger Benoit Bisson, a kidney cancer patient, journalist and SPM member in Montréal, offers an international perspective on the participatory medicine movement. He’s @Benoit_Bisson on Twitter; his blog is BenoitBisson.com. Guest post submissions are welcome from members of our society; instructions here.
As a cancer patient who has been navigating the healthcare system in the province of Quebec, in Canada, for more than six years, I was impressed when I saw how proactive patients were in the United States, particularly through the Society for Participatory Medicine.
The more time I spent reading through the posts on e-patients.net, the more I came to understand that much of that involvement by patients might well be generated by the healthcare system itself. In the US, nothing can be taken for granted as far as health is concerned: numerous players, numerous laws and plenty of different approaches on how to treat something. Faced with all that, the individual has to do a ton of homework if he/she wants to know about his/her condition, best treatment options, all info pertaining to costs, etc.
Here, in Quebec, the patient knows that he/she will be treated within a reasonable time frame, with the best of care available, without the financial burden it would entail south of the border. The social concept of healthcare for everyone is not one that tends to raise questions. In fact, I only started to have questions and becoming engaged when cancer hit. Why? Because I looked up information on what treatments were available, because some of those, although they were approved by Health Canada, were not approved by the Health Department in Quebec. Only then did I start to question the process. I contacted colleagues, who did articles about my story in the papers, about the fact that without those medications I would die.
I’m afraid that on a general scale, the fact that we are provided for as far as healthcare is concerned has made us much less prone to question the system. Sure, you hear regular complaints about wasted time in waiting rooms and overcrowded ERs, but that’s about it. Unless you are struck by disease, you don’t question the system. Rarely will anyone ask for his/her medical record, let alone think about having electronic access to it.
Hospitals are barely beginning to implement electronic records; the provincial government is still struggling to implement a health record that will basically only keep track of prescriptions. Forget about hospital records being online and accessible to patients, they’re not even totally implemented within the hospitals themselves! Getting back to the electronic health record, the only planned access for patients to their health record is getting a paper copy upon request, whenever the system finally gets implemented. Did anyone bring up online access for patients when the approval process was underway? Nope.
That reality, more than anything else, tells me that the Society for Participatory Medicine is very much in a position of leadership with regards to e-patients and participatory medicine. Even better, the US healthcare system has made American patients and health advocates much more aware of the need for changes to the system.
However, the reality of it is that patients in any system need to be empowered and engaged and I dearly hope that the SPM assumes that leadership that is much needed to spread the word — with things like the Seal Program being made global, not just limited to the US — involve patients from anywhere in the world, and help them bring about change. A patient is a patient, regardless of borders. What do you think?
Benoit, I agree: being an engaged patient knows no boundaries. From what I hear, around the world in different systems, the rules are different; but every patient should know:
— No doctor or nurse can possibly know everything. Too much new information is published every year, and there are always several years of additional information in the pipeline that hasn’t even been published yet.
— The patient needs to do his/her part. That seems obvious to most people, but patients still need to know it.
— Even beyond that, every patient needs to play an active role in their care – especially if things aren’t going well, or if it’s a rare condition. If they don’t, then all the burden is on the clinician’s back: the best possible outcome is limited to what your clinicians know. Today, enabled by the internet and patient communities, it’s possible for patients to help their clinicians.
We also need to teach clinicians about the approach to care that Dr. Bas Bloem taught in his talk at TEDx Maastricht, 2011: From God to Guide.
In my experience there are two potent ways to spread this, given that we’re a volunteer society: through social media, and through government policy. SPM has members who know US policy, but that’s not a chosen limit: we simply don’t have members from other countries who are engaged in policy. But social media knows no bounds.
Hi Benoit, I am not sure how many others there are in the society from the UK but what I can see from reading your article and participating in some of the society’s conversations that we are light years behind in patient engagement. The term e-patient is looked at by many as simply a marketing hype and the fact that a patient should take to social media to discuss things is treated as a bit of a laugh. I personally started engaging in the use of sociam media in the build up to my bowel transplant. After inital mocking the hospital now use my blog as a learning tool for medical students to help them better understand the patient journey through transplant. However in the UK you also have to separate the medical from the administrative side of our NHS. Many years ago the last government sanctioned the delivery of a national electronic system so that all patient records would be able to be accessed on line by any doctor in any hospital. It was supposed to completely overhaul the way patient records were kept and improve the information flow. Many years later and hundreds of millions of pounds later it couldn’t be delivered (yet countries such as Sweden achieved it without any problems) so now each hospital trust is supposed to source their own on
line system and pay and implement it. What is has created is chaos and mayhem. Some trusts have done it, others haven’t and as the systems are so disparate one hospital finds it very difficult to talk to another electronically.
Patient access is legally possible but in reality extremely hard to deliver. For example ahead of my transplant the trust I had been under in
London had to fax 3 box files of information to the trust where my transplant took place in order to get the info across. They then had to courier actual copes of the files. Patients are supposed to be able to access all their notes but reality is a different story. The current government is making concerted to sort out this mess but it is a political hot potato and as usual the patient suffers.
I was very interested to read about the Seal programme and hope that this is something I could participate in. It is a great pleasure to meet you and so many others and learn from you all.