In 2006, Dr. Symma Finn, a researcher from the University of Florida doing her PhD thesis in sociology set out to identify what benefits there were to a patient group – specifically Alphas – that were “empowered” or felt a sense of control over their own health. She began to hold meetings with lung and liver-affected Alphas and their caregivers around the country, asking questions about their diagnoses, treatments, relationships with family members and healthcare providers, and discussing whether or not advocacy work, community events, and research participation were viewed as empowering to patients. Her work led to a publication in the Alpha-1 Registry newsletter that is largely repeated here.

After attending meetings, taking notes, and recording conversations with dozens of Alphas, Dr. Finn noticed that certain key themes were appearing over over again, patients described feeling empowered as:

  • Knowing enough about their own condition to manage episodes of illness (knowing which medicines to take or which therapies will help most).
  • Having a good relationship and an open line of communication with either their doctor or nurse or respiratory therapist (ideally all three).
  • Having supportive or understanding family members.
  • Knowing where the best resources are for Alphas and most importantly, the opportunity to get together with other Alphas, or with health professionals expert in this field, to share experiences, feel supported and understood, and to learn from each other.

Most of those interviewed or who participated in the focus group sessions thought it was empowering to march on Washington or write to their legislator, to attend local support group meetings and national meetings, or participate in Alpha-1 events such as bike treks or holiday dinners.

But most felt “activism” and “empowerment” are not the same thing. Two final themes emerged in the patient focus groups:

  • No power over costs – The only area where patients universally felt “un-empowered” was the cost of illness. There is unhappiness and dissatisfaction with the high cost of therapies and the patient’s lack of control over this.
  • Trust – The final theme was linkage between empowerment and trust between Alpha patients and their healthcare providers. One reason that trust is an important issue may be the shortage of Alpha-1 experts. Once a patient finds a doctor or nurse who is an Alpha-1 expert, they tend to stay in touch or at least have their primary care physician stay in touch with the Alpha expert for guidance or treatment recommendations.

Another reason, however, may be the extraordinary courage of most Alpha patients. Those who seem the most “empowered” have accepted their condition and try to work with it to maximize their lives. The doctors and nurses Dr. Finn spoke with had tremendous respect for their Alpha patients and many trusted the patient to help manage their illness.

In many areas, healthcare professionals agreed with the patients on the definition of “patient empowerment”. Most noted the importance of good communication and how beneficial it is for a patient to become better educated. Many talked about the importance of information sharing and disease management from the internet and through patient organizations. Many professionals acknowledged that some patients know more than some of their doctors about Alpha-1.

What was unexpected but wonderful to discover was how many patients “felt blessed” to be a part of the Alpha-1 community. Many seemed to care as much about curing this condition for future generations as they did about their own deteriorating health. This left Dr. Finn awed and humbled to be a part of this community and around such courageous and giving individuals.

What she discovered then is just as relevant today as it was nearly 20 years ago – Alphas who feel empowered, often have better patient outcomes and have a greater sense of control over their condition.