Whew. This past week has been awesome. I have been part of two dynamic and very inspiring meetings. What have I learned?
1. Patient engagement is not an option, it is a necessity. Patients who partner with their caregivers are safer and they have better healthcare outcomes.
2. Don’t just invite me to a an engaged patient, expect me to be one. For patients who have difficulties with that, we need to offer help and gentle guidance.
3. We are all subjects of direct to patient marketing, for medicines, medical devices, hospitals services, and providers. Beware of the pretty pictures and inspirational and misleading messages of medical advertising. It is the goal of the advertiser to get you…a patient, in their grasp. If you pee, breath, eat and sleep, you are a target. Unsuspecting patients/consumers may find themselves taking a medicine or getting a procedure that could cause them harm.
4. Healthcare pricing is out of control and random, and NOBODY really knows the cost of care. It’s time they found out, so consumers can price AND quality compare and make informed choices.
5. “They” think we don’t understand. They being the provider. In their eyes, we can’t comprehend data, the complexities of our bodies, costs, etc. Dropping the paternalistic attitude will go a long way to partnering with patients.
6. There are a lot of well meaning and dedicated patient advocates from all branches of healthcare. Doctors, researchers, pharma employees, Federal health officers, academia, and Hospital systems, etc. But none are more passionate than patients and those who bring the patient’s voice to the table. Patients are the greatest untapped source of healthcare information and guidance. In both of my recent meetings, I used my voice and so did many other passionate generous patients.
7. In a room where patient engagement is being discussed, be sure there is a big representation of patients. Be assured that we will offer valuable information and advice.
8. Informed consent must be just that. No secrets. Use of patient engagement tools, like videos and brochures, and face to face detailed conversations to provide the information needed about recommendations. Patients…do not sign on that line until all of your questions and options have been discussed.
9. Even doctors are fearful of speaking up in the Hospital setting when their family member is in jeopardy. When your loved one is in demise, in the hospital, and nobody is paying attention, YOU RAISE a RUCKUS! In that place and time, nobody is more important than your loved one. Hurting feelings shouldn’t even enter your mind. (The Raise a Ruckus quote came from an esteemed colleague in Patient Safety)
10. Pay attention to the new Choosing Wisely Campaign. Consumers have been getting unnecessary tests, that lead to unnecessary procedures and medicines, that can lead to harm and even death….for a very long time. Consumer Reports in collaboration with the American Board of Internal Medicine is leading a campaign to stop over treatment and overuse of diagnostics that have little or no value in your care and that may lead to harm.
In the past 6 days, I have met some of the most inspiring and pro active patient advocates in this country. I have also learned that many of my ideas and thoughts do matter, and I have used my voice, I hope effectively, in meetings with these people. There is a lot of passion and courage in those meetings. We “patients” are courageous, but so are the representatives of the healthcare industry. If they didn’t care or weren’t prepared to engage, and make meaningful changes, they would not have been in the room. There is a definite shift, and it is good. Everybody gains in the rich conversations between patients and providers, in these meetings. If that is reflected in relationships between providers and patients behind closed doors, one patient at a time, then all of us have made a difference.