As a healthcare technology company, we are moved by the patient advocate and patient experience movement. We feel strongly that we need to better understand patient perspectives and needs, and revisit some ideas we have about patients’ experiences as users of our healthcare system. We recently held a patient discussion group to learn more about the key values, themes and elements of good healthcare from the patient perspective.
The first thing that came up is access. Patients want to be seen relatively soon, without much disruption to their work or family lives just to attend an appointment. They would also appreciate having a choice in the matter, willing to consider traveling further distances to be seen sooner. Waiting for things like elective surgeries can be life-changing, and waiting to clarify a diagnosis can add to stress and anxiety. As important as it was to have timely access to care, patients had very little to help them achieve that.
Communication came up frequently in a couple of important ways. One patient told us about things her new specialist said and did that made her feel like he was in her corner. Another described how great his care was with an interdisciplinary team that had all his information and always seemed to know the next step, making for seamless, purposeful care. Contrast this to the experience of a patient whose family doctor would never find out he was just in the ER at the same hospital. It is important for patients that their doctors have access to their health information, both so that they don’t have to spend a lot of time in the visit going through those things, and so that the doctor is better armed with the information they need to do their job. Our healthcare system is too disorganized to do patients and doctors justice in this respect, and this is certainly a call for patient-owned, or collaborative health records.
As patients relayed their experiences, siloing and accountability were repeated themes. We heard some stories of how in complex care, doctors would look after their specialty’s issue only, leaving nobody but the patient to look after the big picture. Another patient told of how after getting the run-around from various clinics, everything changed when a medical admin on the phone stepped up and went the extra mile to help connect her to a particular program. It took a few minutes but the impact on that patient’s experience was enormous. When it came to coordination between offices, patients often had to take on an active role because of that siloing and lack of accountability (it’s always the other office’s fault). These patients were very high-functioning – what of those who would struggle to advocate for themselves? Of course, many of these issues are because their doctors don’t yet use ConsultLoop, but we know that already. 😉
From a business standpoint, we were elated to hear that the ConsultLoop platform is doing things for patients that align with their needs, wants and values, and we’re inspired to take it even further as we develop our platform. However, from the standpoint of a physician, it was a rather depressing discussion. People want to do well, and to doctors and other healthcare workers, they will surely recognize themselves in that group. Where the patient experience was bad, it was often due to systemic, organizational and administrative issues that make doctors suffer too. Unfortunately, since doctors are the face of healthcare for patients, this is where much frustration is directed. It’s time to demand better from our healthcare system’s infrastructure. We are all suffering as a result of its inadequacy.
We would like to thank all the patients who participated in this discussion and shared their experiences in healthcare. We also thank patient advocates for their inspiration (@patientcommando, @patientcoop, @anetto, @kathykastner), and acknowledge organizations like @hqo and @stmichael’s Family Health Team for their leadership in patient engagement. For any questions on this process and how to do something similar, please reach out, we’re happy to help.