There is nothing more enlightening than hearing from a patient tell their story and their journey through diagnosis and treatment. More and more today, they are going directly online for more information. It seems to be the only place they can go to get digestible information.
But, to their surprise, ePatients quickly find that they are not alone. Most times, they realize that they only previously knew the tip of the iceberg about their condition and the people it affects. The public doesn’t always understand the condition and what the effects are on daily life…and that includes doctors and pharma companies.
Kelly Young lives her life with rheumatoid arthritis. In 2009, she became a leading voice in the RA community when she launched Rheumatoid Arthritis Warrior, her blog and resource center for RA. This site has become a platform for RA community member and Kelly to share their story and their experiences.
During her talk, Kelly shared her story about 2 of the really poor experiences with doctors attempting to diagnose and treat her pain. Meet those two doctors:
“Dr. Do Little”
Kelly visited who she referes to as “Dr. Do Little”. She sat in his office and proceeded to tell her there were no cures for what she was suffering from. She might be able to treat the pain, but there was nothing he could do for her beyond that.
“Dr. Dip”
This is scary. Kelly told her story to a different doctor and talked about the pain and inflammation she had in the tip of her fingers. The doctor went on to inform Kelly that what she was suffering from was not Rhumetoid arthitis becuase it was impossible for it to affect those joints in the fingers.
Returning to her hotel room that night, Kelly stay up all night researching articles that nearly all said that RA can affect the last joint in the fingers. The doctors was blatantly wrong.
Medical knowledge doesn’t just have to come form medical institutions
Patients have more to offer than just being part of a survey. Researchers, doctors, pharma brands are not giving the patient a platform to speak about their journeys by putting them in a room and then giving them a $20 Starbucks card. Fostering patient insights provide an opportunity to improve countless facets of healthcare.
Kelly’s experience as a patient helped her develop some really intriguing perspectives on what she is hearing from brands and doctors and what we as marketers can do to be better partners in healthcare.
- To communicate with patients, begin with listening
- Put yourself in the patients shoes – or in their mother’s, sister’s, or spouse’s shoes
- Patients desire meaningful engagement and opportunities to provide input
- Patients know more about chronic conditions than those who report on them. When there are inconsistencies, patient communities probably hold the answers
- Slick ads that miss the mark anger patents and erode trust
Kelly shared a 3-step quick start guide for healthcare and pharma companies to engage with patients.
1) Read blogs and conversation from the patient leaders of a specific condition
2) Establish relationships with patients
3) Bring patients onto your research and marketing teams to determine best way to communicate
Kelly is right on target, and we wish all doctors would absorb her insights into patients’ experiences and put Kelly’s 3-step guide into effect. Kudos to Kelly for speaking on behalf of RA patients!
Kelly is correct…the big drug companies need actual patients and not paid sports/TV personalities to be a part of the drug company advertising board. Several companies that advertise on TV now would be horrified if they had a room a actual patients in the screening rooms…they’d find us all laughing and snickering. To use one advertiser’s catchphrase “Oh no we can’t” These are not miracle drugs that give you remission the next day. It sometimes takes months for the meds to kick in to where a minimal difference is felt==.
Our best weapon against RA is knowledge, most of which we find on the internet. Being a member of the healthcare community, I was shocked at how little my peers and other doctors in other specialties that I see for RAD comorbidities in my heart and lungs and endocrine problems. actually knew about RAD or my medications. It would be so nice to have an RA Center where every doctor, nurse and therapist would work together to treat the whole patient. RA is not joint pain…it is a systemic disease that presents differently in every patient.
Kelly is right on target! Nothing ticks me off more than a “media whore” who boasts that “take this pill or drug and all your problems are solved.” How about having real patients on who don’t have to make a lot of money from the pharmaceutical companies to share their stories? Rheumatoid Disease and other autoimmune diseases are not a one drug fits all. Rather, it’s a frustrating “hunt and peck” system.