The ICanFunction International Partnership — from Diagnosis to Function

Transcript of the presentation at Stanford MedicineX 2016

“This conference has been fantastic! Think of all the talks that you gave standing ovations! Those were in their majority talks given by the ePatients sharing their stories. Sharing a story is such a rich experience! Capturing body data like weight, blood pressure etc. is easy, capturing the complex stories of patients is not.

I have the privilege to work at McMaster University, the birthplace of Evidence-based Medicine and at CanChild, a research center for childhood disability that has a tradition of including patients in their research activities for over 20 years, way before this has become mainstream. As a developmental pediatrician I see hundreds of children and their families every year. They come to the clinic for diagnosis, treatment or support for all kinds of impairments and conditions. And, of course, in our clinic we are convinced to be leaders in family-centered care. My colleagues and I continually ask ourselves: Are we listening to our patients? Are we communicating clearly? Are we addressing the patient’s concerns? Maintaining focus on the whole patient is our priority.

But, I think we still fall short.

Here’s the problem: For many of my patients, I am not the only professional they see. In my practice, I focus on development and behaviour. Others focus on speech. Or motor skills. Or mental health. My patients also access services for school and community activities.

Each professional works on our own island. Patients have to “island-hop”. They visit each of us separately, sharing news from the others.

Although we may each be patient-focused, not one of us sees the whole patient. And we often miss capturing one critical perspective: the patient’s.

This is the nature of the biomedical model, which analyzes problems by separating and isolating them. It does not aim to see the whole person.

No wonder, patients and families get frustrated. They must continually repeat their stories. They must interpret and prioritize advice from multiple sources. And they often have to relay information between us.

I know we could do better. Care provided by each team member should be aligned to the same goals — the patient’s goals — and communicated in a consistent and systematic way.

I am excited to share that my colleagues and I are working on a solution, which has 3 parts.

Part one:

We want to radically re-orient how we practice health care, away from the biomedical model, towards a bio-psycho-social-spiritual model, which encompasses not just physical concerns, but how a person experiences their health condition. We want to create a solution that enables professionals to work that way.

In 2001, the World Health Organization developed exactly such a model — the International Classification of Functioning, Disability and Health — or the ICF.

Through the lens of the ICF, health is (re)defined as a dynamic interaction between a person’s health condition, their engagement in activities and social participation, environmental factors — which can include the built environment, social policy and cultural attitudes — as well as personal preferences and priorities.

This model is much more aligned with the goals of patient-centered care than the biomedical model, and more closely represents how a person sees and experiences their own health.

Part two:

We want to capture this new way of approaching health in a completely revamped health record. This record would be managed by the patient and shared with professionals collaboratively.

The patient’s experiences, goals and priorities — expressed in their own words — would be systematically captured as an integral part of their health record.

And finally, part 3:

We want to aggregate and analyze these records, translate the data to align with ICF terms, and give researchers and policy-makers access to this data.

For the first time, we could start to develop a clear idea of how people experience their health conditions: what helps, what interferes, what supports them to pursue their goals.

Imagine:

Patients will control and contribute meaningfully to their own health records.

Professionals will collaborate and communicate consistently and productively.

Researchers will access data sets that can immeasurably further our understanding of health.

And, eventually, what we learn can be routed back to the patient and health care team in real time, which can aid in developing individualized solutions for each patient and family.

We are well on our way to making this happen.

A team of 284 collaborators from 39 countries are developing mICF: the software platform and mobile app that will radically transform how we capture, share, translate and analyze health information.

As we finalize the prototype, we continue to seek out partners to test and refine our ideas.

Our ultimate goal is to work collaboratively in support of the patient’s priorities for their own health.

We want to put the person into personalized medicine!

And we hope you will follow our journey. Find more information about the project on this website: http://icfmobile.org

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