Patient Experience/Patient Engagement: always linked for me

Coming Tuesday on the #hcldr tweetchat is a conversation on the intersection between patient experience and patient engagement. This has made me mull over my journey as a patient advocate as a caregiver for my son.

The past several years have evapourated my blind trust in a medical system that
could solve problems for me (him), and that would seamlessly move him (me) into
the correct circle of care.

(An aside: pronouns are difficult when talking about medically caregiving and
ushering your child through a health care system. It is his journey, but we, as
his parents have been driving the journey. However, as he gets older, we need
to start allowing him/encouraging him to do more of the driving. It's a
difficult transition to make)

So back to patient experience and patient engagement - advocating for him has
led me to advocating for others and made me think about how our system works:
where our system is serving the patients and where the patients are feeling
like an afterthought in an overtaxed system.

Patient experience is how we intersect with the health care system – how it should serve us rather than how we are fitting into its construct. It is about looking through the patients’ eyes at each step and understanding how to make the patient more comfortable in the health care setting.

Beyond wanting a better patient experience, looking for a diagnosis for our son and finding quality healthcare has required us to ‘step up our game.’ We’ve had to partner with his health care providers, share information, strategies, problem solve. The only way through for us is to find the health care
providers that are willing to share this journey in partnership. This is patient engagement. Not the passive model of going to the doctor and being told what to do and when to do it. My family's knowledge of what happens at home is as important as the doctors' knowledge. Patient engagement is the active partnership with health care providers on equal terms – I know, it sounds crazy, but it just might work.

Here's the rub, not every patient can advocate or be engaged all the time. Being ill, caregiving for the ill, sometimes it is all you can do just to keep going. Sometimes we are so, so tired. And scared. And overwhelmed. At that point, we need the health care system to be run in such a way that the patient experience has already taken our needs into account. And this is why we need patient engagement – those who can, when they can, feed into creating a better patient experience for those unable to advocate for themselves. Ultimately, one creates the other in a feedback cycle. Engaged patients help create a system with optimal patient experience. Patients whose needs are put first are more likely to be able to become engaged patients.

Where am I in this process? Frankly, it depends on the day. When my son is doing well, I am the ePatient advocate, helping others, dispensing advice, social media-ing my way into creating a better system. When we’re in crisi, it is completely variable depending on which health care provider I am dealing with and on how many balls I am juggling. I need the system to work for me at that point. I need the optimal patient experience in my hospital or clinic to give me the courage and comfort to advocate for my child. Frankly, I don’t always get it. The way I see it, the two concepts, patient engagement and patient experience are two sides of the same coin that will make our health care system work better for all of us.