Addressing the emotional component of a patient's diagnosis isn't often feasible, but these tools can help patients with this important aspect of healing.
In this age of the 15-minute appointment, it's difficult to address the emotional component of a patient’s condition. As we know, emotions can be integral to a patient’s sense of well-being, their healing, and the perception of quality health care. Many patients leave their doctor's office feeling rushed, not having had enough time to process information and ask appropriate questions. And fair or unfair, this can leave patients with the impression that clinicians are uncaring or unfeeling.
One way to address patients' emotional needs in a time-efficient way is through technology (ironic, isn't it). There are several tools/apps that can assist physicians with patients who are trying to cope with illness and potentially difficult treatment processes. Some have a support group feel, and others focus on patient engagement. The purpose of all of them, however, is that they give patients a platform to tell their story. Feeling "heard" can go a long way in patient care and healing.
Created by behavioral scientist-turned-software exec Bob Quinn, HerStory is a new app for patients who need support while going through treatment. Still in testing, this app helps women dealing with breast cancer and mastectomy. (Other women’s disease categories will follow.) Built with input from patients, doctors, and support groups, HerStory allows patients to easily record their personal stories to help other breast cancer patients with advice and emotional help.
“Patients who have gone through similar situations can provide the greatest support,” says Quinn, who points out that the app is set up to review stories before they are published to make sure that the community is helpful and supportive.
Clinicians and behavioral scientists from Stanford and George Washington University have played a role in advising the developers of HerStory, which provides immediate, real-time support and practical advice via story telling and story sharing in a community of women going through the same challenges. For physicians looking for tools to help patients with emotional support outside of the office, this can be a helpful therapeutic tool.
“Research shows that with any illness, there is a tremendous need for social support,” says Dr. Sarah Adler, PsyD, clinical instructor, Psychiatry and Behavioral Science, Stanford University Medical Center. “The mind has a significant impact on physical health. Support, empathy, and connections are fundamental to reducing the stress that comes with needing medical care.”
Adler mentions that shorter appointments do not always leave time to empathize or to listen actively, even when caregivers have the best of intentions. However, some conditions require that kind of support, she said.
“Illness is stressful. Apps and other technologies like HerStory provide a place to get the support that might get missed in a 15- to 20-minute appointment,” she said.
OB/GYNs often deliver stressful and complex information to women who are afraid, confused, and sometimes even angry or heartbroken. These emotions can be palpable, but clinicians generally don't have adequate time to address sufficiently this emotional side of patient care. Information presented in a narrative form has been shown to help, reports Adler.
The value of story telling and sharing experiences and emotions has been documented by doctors and scientists,1-3 and it may be a safe bet that mobile technology that allows adults to join a community where they can receive immediate support not just for the day-to-day challenges of their disease, but for the sometimes difficult process of treatment, can be the answer. Allowing story telling to “come to life” for the millions of women currently going through medical treatment can be an important, effective supplement to clinical care.
Launched in 2007, IngagePatient was created by a nurse with the concept of eliminating the clipboard from patient care and providing a convenient platform for patients to self-manage their experience. It is a cloud-based method of sharing information through all care levels, from primary to specialty, acute, and hospital care.
When physician practices or hospital systems use IngagePatient, they are able to reach out to patients where they spend much of their time-on their smart phone. This mobile platform offers support to the patient so that they can participate in their care in a more convenient way. Available on any smart phone, this app allows patients to schedule their own appointments and request medication refills without the hassle of phone calls or being on hold. This is especially helpful for patients when they are in pain. After logging in, patients can access their prescription and dosage levels, set reminders and alerts to take their medication, and set up their appointments. It also allows for chronic disease management.
The benefit for physicians is convenience.
“The doctor can check on patients remotely,” says Amanda Ceccloni, vice president of marketing for IngagePatient. “It provides a very busy OB/GYN with many needed options, taking away the administrative burden.”
The company uses a secure hosting cloud-based infrastructure, which is HIPAA compliant. Since it is built with newer technology, it can integrate with any EMR.
Facebook is often overhyped, but it can offer women community support in real time. During the Million Women March for Endometriosis earlier this year, more than 10,000 women from around the world logged on to endometriosis communities on Facebook to share experiences and listen to others with endometriosis. Roughly six months after the event, endometriosis groups on Facebook are still going strong, with new communities such as EndoMetropolis, Endo Street, and the Endometriosis Book Club, which have evolved to offer support and connections to women with the disease.
“We still use Facebook as a central point for discussing our pain, our successes, and challenges," said Lindsay Murphy, freelance writer for Hormones Matter. On Facebook, Lindsay shares her own battle against stage 4 endometriosis, which has resulted in four surgeries.
“Many of these women have had to have multiple surgeries, so Facebook communication has become a way for women to fact-check their doctors. Everyone is communicating about what is done during treatment. We’re sharing so many things, including treatment protocols, what doctors are saying during appointments, and how we’re doing day to day.”
Murphy insists that this forum is forcing consistency in the industry.
The strength of Facebook is its familiarity, so it is easy to refer patients. Its weakness is that unlike HerStory, the content is not screened, so there is a potential for misinformation. Still, it remains a strong resource for support.
Recommending Facebook communities that are condition-specific, such as EndoSisters.org, can be helpful for support. However, patients must fact check the information using credible medical sites and, most importantly, with their doctor.
Health care providers today simply do not have the time to provide the kind of emotional and community support that many patients need. Offering resources to communities that can provide more in-depth support is a way to show patients that you recognize a need that you are sensitive to but that you personally are unable to meet. In addition, visiting these sites can offer insight into the patient experience beyond what you see in your practice.
Han Le, MD, a consultant for HerStory and other technologies, points out that each physician is coming from an intellectual level, not a peer-group level.
“Many physicians are very good at providing counseling for their patients, but patients still gain a lot of insight from being able to connect with others. Those shared experiences allow them to speak on a peer-to-peer level."
She adds, “It’s tremendously helpful to physicians to be able to recommend a safe, secure community where patients can share their collective wisdom. It means that a physician is able to help arm patients with the best tools that they can turn to, even when the physician isn’t available.”
Directing patients to resources that allows them to tell their story and that can offer them the emotional support that they need goes a long way in the healing process. It also lets patients know that you do empathize and understand that their diagnosis goes well beyond the clinical.
1. Gowan J. Why sharing stories brings people together. Available at: http://www.psychologytoday.com/blog/you-illuminated/201106/why-sharing-stories-brings-people-together. Accessed December 2, 2014.
2. Campion-Smith C, Austin H, Criswick S, et al. Can sharing stories change practice? A qualitative study of an interprofessional narrative-based palliative care course. J Interprof Care. 2011;25:105-111. Available at: http://www.ncbi.nlm.nih.gov/pubmed/21043556. Accessed December 2, 2014.
3. Greenhalgh T, Campbell-Richards D, Vijayaraghavan S, et al, for the National Institute for Health Research Service Delivery and Organisation programme. The sharing stories model of diabetes self-management education for minority ethnic groups: a pilot randomized controlled trial. Available at: http://www.nets.nihr.ac.uk/__data/assets/pdf_file/0018/64503/FR-08-1504-111.pdf. Accessed December 2, 2014.