Managing a rare disease while staying focused on your goals and plans in life can be a delicate task. Many times people with conditions like hemophilia, hereditary angioedema or primary immunodeficiency diseases have to adhere to a regular medication schedule in order to stay healthy. Figuring out the best way to fit treatments into your everyday life requires a well-thought out game plan. A health coach could be a good option to help you get to your goals.
Health coaching is a practice that may be ideal for patients who want to work with their clinician to identify and implement treatments that may work best for them, rather than just being told what to do. A health coach, or a health care professional trained in a coaching approach, works one-on-one with a patient to help implement lifestyle changes such as healthier eating, increased exercise or weight loss. Health coaching can also help people manage their medicine regimen.
Health coaching in the U.S. has been primarily utilized as a way to manage common chronic, but controllable conditions like diabetes and high blood pressure. But some healthcare professionals elsewhere are experimenting with its use in managing other conditions, including rare diseases.
Dr. Nina Barnett is a London-based hospital consultant pharmacist and a health coach who has taught a coaching approach in the United Kingdom in treatment for those with hemophilia. She encourages healthcare providers to look at those they’re treating as people living full lives, not just simply patients.
“The foundation of health coaching and hemophilia is that it starts with recognizing that the person you’re treating is a person who happens to have a long-term health condition that’s called hemophilia,” she said in a phone interview. Hemophilia treatment providers can be trained to use coaching alongside their clinical expertise to deliver more person-centered care to people living with the condition, Barnett added.
That type of treatment can mean having a two-way conversation to find out which parts of their treatment plan are working with their life and which parts aren’t, Barnett said. The process prompts patients develop a solution on treatment and medication in tandem with their doctor. It’s an approach that Barnett said makes patients “active participants, rather than passive recipients of care” and more likely to stick to their treatment plan.
“A coaching approach is very much co-creating solutions and helping them come up with options on how they could manage,” she said. “You’re adding in information as it fits with those options.”
Barnett said some health care providers who have implemented a coaching approach have told her that it helps them quickly build a strong rapport with those they are treating, a crucial asset in treating a lifelong condition like hemophilia.
Health coaching isn’t just for doctors, nurses and pharmacists. Many health coaches are non-health care professionals who receive training for coaching patients. CSL Behring utilizes a peer-to-peer health coaching method that enlists patients to coach fellow patients on their treatment.
Janet Richards has a primary immunodeficiency disease and serves as a mentor to others with similar conditions in CSL Behring’s Voice2Voice program. She learns just as much as she educates during her one-on-one time with peers, she said.
“I learn from them ways that they as a family have rallied around to support each other, love each other, cope with adversity,” she said. “There’s a source of strength there that we’re a family now.”
Those interested in finding a health coach may want to contact their insurer to see if they offer a health coaching service or coverage for one.