Part II- The Collaborative Voice
WHO…
We have addressed briefly that interconnectedness plays a role in the dynamics of a complex system, but this inter- connectedness also applies to how we network with each other, both in and out of the system as a patient. But as a patient (new or chronic), network with whom? … {i.e. I don’t know anybody in the system… I think I have a relative who’s a nurse in Winnipeg...does that count?} The fact is there are a lot of stakeholders in healthcare: hospitals, clinics Doctors, Nurses, Allied Health professionals, Academia, Health Policy makers, public and private payers, Big Pharma, small Pharma, generic Pharma, pharmacy, distributors suppliers, device manufacturers, and of course Patients and Caregivers. Every one of these stakeholders has influence over someone and are themselves influenced – all are interconnected in some way.
Interesting that the only stakeholder in the system who is not paid to be there is the patient…and it is the patient (and their families) who must bear the total brunt of any of the resulting outcomes. There is a lot of talk about the patient at the centre, but the only stakeholder who can honestly say they have a 100% committed, rooting interest are the patients themselves. Self –advocacy is critical and this survival kit will help us interconnect.
WHAT….
When we talk about Navigating through the system, ….what system are we talking about? The human body is a system, holistic yet made of many smaller systems –respiratory, circulatory, lymphatic system etc. Interesting that each of these “systems” of the human body also has specific specialist experts…often in completely different locations. Does your local network collaborate in your care with you as the patient at the centre?
What if you are a person living with diabetes (or any chronic condition), who has a heart attack, and has prostate cancer…in a long term care facility? (this concomitant disease scenario is not that rare). Is the system really set up so that I can navigate through it? What could the system have looked like when you were young and healthy –and not yet a patient? We need to have a map. Not necessarily a specific map (although that is helpful) but the skills to find our way through the system by creating our own map. Paradoxically, if one spends an inordinate amount of time wondering around a specific area and explores enough, you don’t need a map any more.
HOW….
The” how” is becoming pretty self- evident that the Patient has to have a Collaborative Voice in their own care. Much is currently discussed about empowering patient groups, patient centric decision making and patient oriented research. The key point is that “empowering Patient Groups” has the potential for setting up yet another silo’ed stakeholder in the complex system that is Healthcare. It is a collaborative voice of patient Opinion Leaders, Health Care Professionals, Industry and Policy makers that can affect change.
In order to survive and thrive in this journey for a better health outcome, one is reminded of the saying “first to understand…then to be understood. This is the crux of what this occasional series is all about. How can we learn, share and execute actual tried and tested strategies to ensure that our hearts and minds are prepared to survive the patient journey with the best possible outcomes? Sometimes the outcomes may not be the best as we had hoped, but if one is taking control and responsibility for their own (or loved ones) care then perhaps the experience of the journey itself will be more manageable, even fulfilling.