The only person with the greatest interest in my health? Me. Consequently the more I know, ask, and understand about my own health care the better off I am. I can’t imagine NOT being engaged. In patient centered care, the patient and her health care professionals work together as a team to achieve mutually determined goals, from reducing bad cholesterol to bringing an aggressive cancer into remission. The process is the same although the objective may be different.
What gets lost in much of this discussion is the huge cultural shift we’re experiencing right now. Historically physicians were not used to being questioned but the poor performance of our health care system has necessitated change. Patients and evolving technology –largely Web 2.0 – are helping to bring this about. It’s essential that we remember that technology is not the end in and of itself but the means to an end – which is a healthy society. We’re so far from that it isn’t even funny. And even if I have my own electronic medical record, it doesn’t change the fact that too many people don’t even have a doctor.
Patients like me – white, educated professional women with private insurance? We find what we need in a country where poverty still haunts millions. That’s a truth not enough people talk about. I was treated for cancer at MD Anderson Cancer Center beginning in l998. I can access the vast majority of my medical record, and message my oncologist or staff via their patient portal, MyMDAnderson. It’s terrific. It’s secure. Last week I had a question for my oncologist since one of my siblings was recently diagnosed with two different cancers. Within a day I had an answer. That’s amazing. So I can readily compile my own record from that data at MD Anderson and from the reports my regular internist routinely shares with me. Knowing how, and that I can do this is wonderful. Fortunately I have no pressing health issues at this time though I do keep tabs on lipid profiles and blood pressure. For a long time I’ve recommended that everyone have their medical history and current medications on a flash drive (or in the cloud, if one’s comfortable with that) and keep the information updated. Being an engaged patient often means – just being responsible for your own health. Knowing your own history and having it well organized is part of the equation.
Any of us can learn more about doctors by following them on Twitter! There aren’t as many oncologists as I’d like, but there are some – @teamoncology, @rsm2800 and @drsteventucker come to mind. To me engaging with physicians in the social space is a wonderful way to learn about your illness in a nonthreatening way.
Jody Schoger is a cancer survivor and free-lance writer. She is a co-founder of #BCSM, a weekly tweet chat for women with breast cancer and blog about cancer survivorship issues at http://womenwcancer.blogspot.com/
Liver transplant and IBD patient accelerating patient engagement and collaborations in health technology, policy, and systems improvement
Washington, DC • http://www.dcpatient.us/
Patient engagement is an active choice by a person seeking to understand or improve their health to acquire knowledge, share that knowledge with healthcare professionals and/or the patient community, and take some action or deliberate inaction towards a health goal that fits their personal circumstances and values.
Digital technology can play an important role in patient engagement and helping the patient be a stronger contributor to the patient/physician dialogue and relationship by providing real-time access to information about a condition, monitoring, organization and visual representation of daily symptoms and activities that support clinical decisions based on accurate and complete information, and facilitating administrative details so that the limited face to face time is spent truly discussing and deliberating on detailed diagnosis and strategy development for treatment selection and adherence.
I help family caregivers. Founder, Caregiving.com | Certified Caregiving Coach | Author | Speaker. Interests include social media, biking, sports and travel – Chicago, IL • http://www.caregiving.com
Patient engagement addresses the emotional, physical, spiritual and financial needs of a patient (and, when appropriate, the patient’s family). An engaged patient has the information, resources, tools and support he or she needs to live a life of quality, however the patient defines it.
And, yes, online communication and access to medical records can absolutely improve patient engagement (for the patient and the family caregiver). So much of the health care experience involves a waiting game–waiting for a return call, waiting to see the doctor, waiting for copies of medical records. The wait frustrates and discourages the patient and the family caregiver because it really and truly is a waste of time. Patients and their family caregivers are so involved in the health care experience that access to health care professionals and information should be readily accessible and available.
Denise M. Brown founded Caregiving.com in 1996. She’s authored five books to help family caregivers and regularly presents at conferences about the caregiving experience.
Afternoon Napper – Sarah E. Kucharski
Official Tweet feed of The Afternoon Nap Society—napping, ruminating from a prone position, advocating for health, fostering the patient voice in medicine. Dreamland • http://afternoonnapper.com
Patient engagement is about taking responsibility for one’s own healthcare. Many people chose to sit back and passively accept whatever course of action their healthcare providers prescribe with no questions asked. Healthcare providers are, by job definition, supposed to do what is best for their patients; however, the providers aren’t the patients—they aren’t the ones who must live with the disease and its effects. An engaged patient pushes providers to respond to his or her individual needs whether that be by spending time to answer questions in detail, evaluating medication side effects, or even discontinuing life-saving measures.
Digital technology is changing the doctor-patient relationship for those doctors and patients who are willing to embrace it. Patients have much greater access to information now, and doctors have, sometimes rightfully so, grown tired of patients saying, “I read this thing on the internet…” There is nothing wrong with doing online research so long as the sources are credible. Doctors can play a tremendous role in educating patients about what information is and is not trustworthy by increasing patients’ healthcare literacy. Patients who can more accurately vet the information available will in turn be more knowledgeable about their conditions and more able to be participatory partners in their care. Smart phone and tablet applications for self-tracking already exist and more continue to be developed. For example, patients can keep records of their blood glucose and send the information to their doctor’s office just prior to their appointment. However, can doesn’t mean will. To make digital technology a regular part of healthcare, we must continually work to improve access and usability, and, of course, acceptance of change.
Sarah E. Kucharski, The AfternoonNapper is a 31-year-old writer, reader, editor, teacher, etc… She lives with a long medical history including triple bypass surgery. She is on the patient advisory panel at the Cleveland Clinic, Founder of FMDChat, advisory panel member for Medicine X ePatient, Stanford University, and speaker Doctors 2.0 speaker, Paris, France.
— Next up
I weigh in on the topic and share my thoughts on patient engagement and technology.
What do you think patient engagement means? Do you feel that digital technology can help the doctor/patient relationship? Please share your thoughts in the comment section below.
As always thank you for your valuable time and for sharing your thoughtful insights.