Mission: Cure is a coalition of patients, researchers, doctors, and entrepreneurs who have taken a new approach to curing diseases. Their first focus is pancreatitis, and they have created a report that outlines the best care for these patients. To do so they spoke with patients, caregivers, and healthcare providers in order to best understand their situations and create ideas to fix them.
Pancreatitis occurs when the pancreas, the organ responsible for producing enzymes and hormones that aid in body regulation and digestion, becomes inflamed. This condition can appear in different ways: acute and chronic. The former happens suddenly and lasts for a few days, while the latter occurs over many years. In terms of symptoms, acute pancreatitis causes upper abdominal pain that can radiate to the back and worsen after eating, tenderness when touched, rapid pulse, nausea, vomiting, and fever. If one has this form, and it is recurrent, it may lead to chronic pancreatitis. The chronic form results in pain in the upper abdomen, losing weight without trying, and abnormal stool.
This condition is the result of the activation of digestive enzymes while they are still in the abdomen. They irritate the tissue of the pancreas, causing inflammation. There are a number of conditions that can lead to pancreatitis, such as alcoholism, cystic fibrosis, infections, and more. Risk factors also exist: obesity, smoking cigarettes, excessive consumption of alcohol, and a family history of pancreatitis. It is important to seek treatment for this condition, as complications like kidney failure, pancreatic cancer, and malnutrition can occur.
Pancreatitis patients often face obstacles when seeking a diagnosis, finding the best physician, and receiving treatment. Mission: Cure aims to fight this through the use of patient voices, research, and standards of care that are based on evidence. They want to provide the best physical, mental, and emotional well-being for patients.
To do so, they have spoken with patients, caregivers, medical professionals, and experts to find gaps in care and discover ideas to improve it. They compiled all of their work into one report with the hopes of accomplishing three goals:
- Provide a shared understanding of the patient experience
- Reimagining care through the use of provider perspectives and patient needs
- Collaborating and participating in partnerships to improve patient care
In order to reach these goals, there was an extensive effort focused on outreach to invite both patients and caregivers to talk about their experiences. Over the course of ten weeks, twenty interviews were conducted. Interviewees ranged in age from under 18 to over 65, were impacted by both chronic and acute pancreatitis, and were male and female.
In addition to this, there were a number of open-ended phone/video calls, notes were taken and synthesized, and the perspective of healthcare providers was documented in order to improve patient care and outcomes.
The Patient Experience
As mentioned, a major goal of the report was to reach a better understanding of the patient experience. Here is what they found.
- Pancreatitis patients often wait a long time or are misdiagnosed due to a lack of understanding from providers
- They are brushed off, misdiagnosed, ignored, or stigmatized
- Because heavy alcohol use can contribute to pancreatitis, many patients face judgement from providers regardless of their history
- Standards of care are inconsistent and outdated, heavily impacting quality of life
- Many patients spoke of the lack of explanation or help after receiving their diagnosis
- Different care providers gave different and conflicting treatment advice
- Minimal help is provided to manage pain, which lowers quality of life and increases anxiety
- Pancreatitis patients are often labeled as “drug seekers,” which then makes them afraid to ask for the proper pain medication
- Others are told that they are exaggerating their pain
- Few people address pancreatitis’ impact on mental health
- Many forget how patients can feel isolated, anxious, and depressed
- Caregivers can also experience a negative impact in regards to their mental health
Essentially, there are many problems that exist within the current patient experience, and something needs to be done to fix it.
To remedy the problems that they identified, Mission: Cure has created four strategies to improve care for pancreatitis. Firstly, there must be a comprehensive standard of care that put the patient first. This means that there should be a consistent diagnostic method that addresses the problem of delayed diagnoses or misdiagnoses. Medical professionals should also provide a patient with a tiered management plan and a plan to recover, along with tracking patient outcomes.
The second method consists of a multi-disciplinary and coordinated care team. They must all understand the symptoms, causes, and the best treatment courses for pancreatitis. Mission: Cure lists the things that providers absolutely must know, including mental wellbeing, pain management, care coordination, pancreas care, and a wholesome diet.
Healthcare providers’ education should include patient experience and new research as well. They should receive continuous education throughout their careers as it would help to give them a better understanding of the condition, overcome biases, properly diagnose pancreatitis, and better treat patients.
Lastly, there should be one source that holds all information in regards to pancreatitis, such as causes, therapies, promising approaches, and more. It will help patients navigate the loads of information that can be found online, some of which is misleading or entirely false. This would be helpful to both patients and their caregivers.
Now that a plan has been created, there has to be steps to put it into place. Mission: Cure has already made moves to educate through webinars, experts, social media, and more. Their plan includes further effort to raise awareness, educate, and advocate for patients.
They will also engage with patients and their caregivers to ensure that they have access to various treatment programs. The pandemic has expanded access to a number of programs, especially ones centered around telehealth. Mission: Cure aims to give access to these programs for pancreatitis patients.
The last step is to explore partnerships with experts and leaders in medical education. These connections will improve the education that medical school students and medical professionals receive, therefore improving their ability to treat pancreatitis patients.
While there is still a lot that needs to be done and more factors to be taken into account, this is a big step in the right direction. Hopefully, this plan can be implemented and better the lives of patients.