Measure Development: The Story

Submitted by danny@pcorcds-ln.org on Fri, 06/08/2018 - 12:40
Author and his mother
              Danny and his mother

I’m the child, Custodian, and Healthcare Proxy of my 89-year-old mother, Alice. I live in a different state. My mother has diabetes and is depressed. Her care team, beside herself and me, includes medical providers in various health settings, community support agencies, and a full-time caregiver that helps her schedule and get to health-related services. My problem is to understand what my mother wants for herself, make decisions about her medical care with her and her professional team, and to track who says they’re doing something for her (including my mother and me), what they’re doing, and when they’re doing it. I want to know what it takes to do it (Can she afford it? Can she get there? Does it agree with her? Who will be with her? etc.). I want to know if the actions have the effects we thought they would. I want to know what her risks are and how we plan to prevent or respond to them. I want to able to keep track of all this and keep it current. I want to share it or have it shared from day-to-day and from setting to setting even if I’m not present.

This scenario describes a vision of healthcare for a caregiver and his mother. The vision lives in a context of social circumstances, physical environment, individual behavior, genetics, and medical care – the determinants of health. In the best of circumstances, healthcare dollars pay for this vision of best health for people, their families, and communities.

Recognizing best health (value) is complex. The scenario above reflects what patients and family caregivers want. We want to:

  1. Function as well as possible, improve or maintain our mental and spiritual health, and stay safe.

  2. Work with a team we can trust, who has time for us, and work with each other (including us).

  3. Get help to clarify and communicate our health goals and preferences and understand how treating our medical problems will make it easier for us reach those goals.

  4. Experience empathy from our team about our life challenges and barriers.

  5. Make informed choices with our teams as we build a plan for our care.

  6. Be sure smooth communication about us occurs across settings and team members (transitions in care) i.e. keep track of our overall plan of care (including mitigating health risks) and our progress and challenges in meeting that plan.

  7. Live in communities that offer non-medical services that increase the likelihood of our best health.

  8. Learn together what works for us and try something different when something tried doesn’t work.

  9. Support those who care for us (professional and non-professional) so they maintain their own health and don’t burn out.

  10. Be able to understand, predict, and afford the cost of treatment and service.

Notice that this scenario about Alice and her son is not diagnosis or setting-specific. Your circumstances will be different. Those circumstances are the determinants of health. Thankfully, the ten wants above are common to any diagnosis and setting. Sadly, our current national health and sickness payment systems reimburse none of the ten wants. There aren’t widely accepted ways of measuring best health (outcomes) as listed here. We also don’t well measure the workflows and life flows (processes) that help us reach the outcomes. The problem with not being able to measure these views of quality is that we can’t then pay for value that is meaningful to us. Without alignment of payment and value, providers and payers of health treatment and services won’t fully help us meet our ten wants. We have a lot of work to do.