Every patient has a story to tell, and here’s why sharing that story is so important: The act of writing decreases patient stress around procedures, improves provider-patient communications and provides unique data to healthcare providers to improve the patient experience.
Research shows that writing about experience with surgery, a visit to the hospital, or struggles with an illness can help a patient gain a sense of control and decrease stress.1–3 And it ties in with the Joint Commission’s directive that has made patient involvement in their medical care a priority safety goal.4
Setting up a system to help patients start writing isn’t heart surgery (or brain surgery, for that matter). But it does take some expertise to implement a program that can be efficiently integrated into a patient’s movement through treatment, while also collecting useful information. Add the need for patient privacy, standardization of data collection and respect for a provider’s extremely limited time, and you raise the bar a bit higher. On top of that, the process should give providers access to data that has been analyzed and organized. It should offer patients the ability to share their stories in a respected forum while also ensuring provider anonymity (“No providers’ reputations were harmed during the sharing of these stories”).
To bring together the interests of both healthcare providers and patients, we created a process to do all of the above. Paul is a surgeon, Ken is a medical journalist, and we have both been — like pretty much everybody else — patients at some time or another. We founded HealthAngle to enable doctors, other healthcare providers and medical centers to provide an outstanding patient experience by enriching the patient-doctor relationship. We work with healthcare providers to help their patients write about their medical experiences, and to use the feedback to improve everybody’s experience (a less stressed patient makes for a less stressed medical team, and offers the potential for improved outcomes).
What Is Narrative Medicine?
Narrative medicine started as a technique for doctors, nurses and other healthcare providers to gain insight into their relationships with their patients, and to better understand themselves as people and as healers. The main components are writing and then reviewing what is written. The practice was formalized at many medical schools, most prominently at the College of Physicians and Surgeons of Columbia University.5
We have extended this approach to patients and their families, offering people instruction and tools with which to write about their health experiences, and to use the information to decrease stress and better manage their health.6,7 The beginning of this process is the writing itself.
We partner with medical providers to offer their patients opportunities to write about their medical experience and to channel the data back to the provider for quality control and improvement. Providers may also use selected stories as examples for prospective and current patients to learn more about the medical practice and a source of advice for procedure preparation and recovery.
The value of HealthAngle is twofold. We offer the public the ability to get information and reduce stress, and, when asked directly, provide feedback to providers. And providers receive the feedback, integrate patients into a process to help them better manage their medical care and strengthen the patient-centric approach of their practice.
The stories focus on procedures from A to Z. No procedure is too minor (blood test/mole removal) or major (craniotomy, mastectomy, angioplasty), as stress is in the eye of the person about to undergo a procedure, no matter what it is. We focus on procedures — and are constantly adding procedures — because that is often a point when people are under stress, and the stress is finite (as opposed to the stress of disease or injury, which may be chronic). Also, while there are many conditions, there are fewer procedures. Data around procedures can be organized and managed into useful information, with fewer variables than when dealing with diseases. For example, patients getting catheterization are going to undergo a similar procedure whether it is for a septal defect, valve stenosis or arrhythmia: Different diagnosis (or suspected diagnosis), but similar procedure.
Our provider partners can reach their patients in two ways: Some doctors/practices/clinics send emails within days or weeks of a procedure, asking a patient how they are doing and asking them to take eight minutes or so to fill out an online survey (www. healthangle.com/share). Or a doctor, nurse, receptionist or office manager can hand out a printed version of the story survey with a self-addressed stamped envelope. We work with a variety of practices, and patient response is above 60 percent for emails, and lower, though still significant, for printed surveys.
It’s About the Process
The writing is not about proper grammar, spelling or brilliant narrative. The important part is the act of writing itself, which has been clinically shown to help people better understand their medical experiences, improve their ability to share this experience to better communicate with their family and healthcare providers, reduce stress around these issues and improve potential for better outcomes.8,9
Once we receive a response, our editors weave the answers into a story. It is edited for spelling and style. We do not change voice, but we will rephrase sentences so that information delivered in a potentially upsetting way — “at the beginning of the spinal tap the needle to numb my back was excruciatingly painful for about six seconds” — is edited to carry the same information but in a more neutral tone, e.g., “at the beginning of the spinal tap, they numbed my back with an injection that was not pleasant, but the area became numb quickly, in about six seconds.” A medical doctor then reviews the story for accuracy. This is to eliminate inaccurate medical information, patients’ opinions that are not medically accurate and any misinformation.
A story will then be published at HealthAngle.com (here’s a thyroidectomy example: www.healthangle.com/ procedures/thyroidectomy). A story is identified by a first name (the patient can choose to use his or her real name or a pseudonym), gender, age and state where they had the procedure. Any identification regarding providers is removed prior to publication. A patient, if they choose to share their email address, is then notified when their story is published, thus further engaging him or her in their medical care.
Report for Providers
A report is generated for the provider once a significant number of patient stories for a particular provider are collected (generally a minimum of 20). The report details patient experience at the particular provider location. The data provides a high-value window onto patient movement through the hospital and office around specific medical procedures. The information helps providers confirm positive practices and highlight areas of stress. The feedback may also be used for marketing communications to prospective patients.
About the authors. Paul Konowitz, MD, and Ken Wilan are founders of HealthAngle, which enables doctors and other healthcare providers and medical centers to provide an outstanding patient experience by enriching the patient-doctor relationship. Visit HealthAngle’s consumer-facing side, www.healthangle.com, to learn more.
Paul and Ken can be contacted at firstname.lastname@example.org.
Copyright 2010 HealthAngle.
Start Your Patients Writing
HealthAngle is offering Cath Lab Digest readers a free introductory subscription to our Provider Partner Program. Current partners in this Program are enthusiastic in their praise of the Program and its benefits in managing their practice. Timely patient feedback will be provided to you in a complimentary personalized report that HealthAngle will compile from responses received from 20 or more of your patients. To sign up for this complimentary offer (or to learn more), please email us at email@example.com / Subject head: Cath Lab Digest. Please include: Contact name, telephone and email address. Or fill out a contact form at www.healthangle.com/contact.
1. Langens TA, Schüler, J. Effects of Written Expression: the Role of Positive Expectancies. Health Psychology March 2007; 26(2):174-182.
2. Stanton AL, Danoff-Burg S, Sworowski LA, et al. Randomized, Controlled Trial of Written Emotional Expression and Benefit in Breast Cancer Patients. Journal of Clinical Oncology Oct 2002; 20: 4160-4168.
3. Smyth JM, Stone AA, Hurewitz A, Kaell A. Effects of Writing About Stressful Experiences on Symptom Reduction in Patients With Asthma or Rheumatoid Arthritis. JAMA April 1999; 281(14): 1304-1309.
4. The Joint Commission on Accreditation of Healthcare Organizations, 2009 National Patient Safety Goals, Accreditation Programs: Hospital, Chapter: National Patient Safety Goals, Page 23. Available at: http://www.jointcommission.org/NR/rdonlyres/31666E86-E7F4-423E-9BE8-F05BD1 CB0AA8/0/HAP_NPSG.pdf. Accessed December 16, 2009.
5. Charon R. Narrative Medicine. LitSit Alaska, Healing Medicine. Available at: http://www.litsite.org/index.cfm?section=Narrative-and-Healing&page= Perspectives&viewpost=2&ContentId=985. Accessed December 16, 2009.
6. Demir F, Ozsaker E, Ilce AO. The quality and suitability of written educational materials for patients. Journal of Clinical Nursing January 2008; 17 (2): 259-265.
7. U.S. Department of Health and Human Services, Consumer health literacy, National Network of Libraries of Medicine, Health Literacy. Available at: http://nnlm.gov/outreach/consumer/hlthlit.html. Accessed December 16, 2009.
8. Pennebaker JE, Francis ME. Putting Stress into Words: the Impact of Writing on Physiological. Absentee and Self-Reported Emotional Well-being Measures. March-April 1992; 6(4):280-287.
9. Charon R. Literature and Medicine. Acad Med 2000; 75: 23-27.