This is the first of a two part series on patient engagement
Have you ever been in a relationship with a passive person? Whether it was a friend or a romantic partner, the other person’s passivity can put you in the position of always having to reach out to them. And that, in turn, breeds a sense of disconnection, of being powerless. You are always waiting for a call back, never getting all the information you need. And eventually, you find yourself giving up, just accepting whatever you can squeeze out of the relationship.
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That’s how many people feel about healthcare. I know that feeling. I was diagnosed with stage 2 breast cancer at the age of 25, so I’ve had an 18-year relationship with the healthcare system. And I’ve often felt like the really annoying girlfriend who is really into the relationship, and my healthcare providers were the passive boyfriend who will see me when I call but doesn’t ever really initiate interactions with me. It’s been a very one-sided relationship and one where the boyfriend is always late.
It probably wouldn’t matter if I hadn’t had cancer or some other serious health condition. If I hadn’t needed them, their passivity wouldn’t have been that big a deal. Annoying, but something you can shrug off in a casual acquaintance. Not so much when your life, literally, depends on them.
I have a unique perspective on the subject of patient engagement. Not only have I been that needy patient desperately trying to engage the healthcare system, I now am the Patient Engagement Customer Relationship Management solution leader at NTT DATA Services (formerly Dell Services) and I worked at one of our nation’s biggest hospital systems for eight years. So I’ve looked at both sides now, to quote Joni Mitchell’s song about life and experience. But it’s not life’s illusions that I recall, but the frustration of trying to engage with a passive healthcare system.
It’s not that I didn’t get good care, or that I was unable to find the information I needed. I did get good care, and my current life, with my husband two wonderful children is a testament to the good care I received. But what if I hadn’t had the education, the resources and resilience to tenaciously seek out what I needed?
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I’m lucky; I have the means to be my own advocate. But what about those that don’t? We are still living in a time when people get lost in the system. The ball gets dropped. Sometimes those folks don’t get the care they need or don’t have the outcomes that I have been fortunate enough to have.
A lot has changed over the 18 years since I received a cancer diagnosis, but one thing that has remained constant is the big challenges around coordinating care and communication. The side effects from chemotherapy is one example. I had been warned about many of the side effects I experienced, but some I had not heard about. It would have been great to have had daily check-ins with my care team via mobile phone or computer to let them know what I was experiencing that day. They could have told me that the mouth sores I had were not unusual, and that ice chips go a long way in helping relieve the discomfort. I suffered for days before getting that information.
My quest for information continues into what is now my survival stage. The touch points have become fewer, but there is still much I want to know. What new discoveries have there been since I was treated? What will help me avoid a recurrence? And what does my disease mean for my children? The survival stage for me is bigger than my own story. I now am on a pursuit for information that is going to help assure that my children don’t have to walk in the shoes I did. Not only am I concerned for myself about the long-term effects of chemo, reoccurrence statistics and any new insights about cases like my own, I’m now an advocate to make sure that my 19 year-old daughter is screened and watched.
Next week: Engaging patients before they know they need you
Photo: PeopleImages.com, Getty Images
