All patients were at various stages of treatment and each had different reactions to treatment. However, all could agree on the debilitating power of the disease. As one patient put it, "it's a silent killer."
Most patients knew where they got HCV: through IV use, shared utensils, etc. While others had no idea; some speculated that dental or manicure equipment caused infections. Some patients just started treatment, some just reached a viral load of zero, some were cured years ago, still others were uncured and are awaiting a new treatment said to be released in December, Sofosbuvir.
Some patients had little-to-no knowledge about HCV, while others, later in their treatment, had plenty of advice to share. The grey area that they all hit was on treatment. Not many were aware of the drugs they were taking, or the course of the treatment. A key component of the app will be to track a patient's disease and give them basic and fruitful knowledge of the medications they are taking.
The group taught me much more about HCV than most medical papers revealed. For example, I learned that patients need to take 20 grams of fat, in any form, before taking Telaprivir so their bodies can absorb the drug. Which I later found was true: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a611038.html
At the end of the session, upon Dr. Atreja's request, I shared the idea of an app that tracks patient progress, symptoms, and leads them to a cure. The patients were very happy to hear this news, although not many had smartphones. However, they did suggest ideas for the app and I also noted the major things that came up during the discussion:
- Diet, Exercise, Water Intake: I think it would be wonderful to add an icon to the app that tracks how many glasses of water a patient drinks, how much exercise he gets, and how healthy his diet is. However, it won't be a weight-loss app because the goal is not to lose 20 lbs, it's to stay alive and be healthy. For that reason, foods will be registered as green, yellow, or red. The patient will need to have some fat in order to take their drugs (red), carbs (yellow), and vegetables and fruits (green). Each portion will have a suggested intake and the patient will try his best to meet the "ideal plate." There can also be an icon that looks like a water glass, where the patient logs how much water he drank to reach the suggested intake. Lastly, we can have a logbook for patient activity. At the end of the day, the patient won't go on a scale to see how much weight he lost, but he'll log how well he feels from 1-10 and include a note. Since this isn't the main function of the app, it will be simple. Simpler than what I just described, but I also think that it's necessary. Dr. Atreja said that the importance of diet and exercise is just speculated by nurses and patients. In order to make it an icon, or a major portion of the app, there needs to be enough proof through medical publications. Otherwise, it will just be in a forum that says "what patients recommend." However, I will look for medical documents and clinical trials that prove the validity of these claims and push to make this an icon in the app. If the claims are supported, it will be there.
- Symptom tracking: Many patients complained about symptoms such as thinning hair, itchy skin, nose bleeds, etc. One patient said, "Listen to your body. If you have a problem, take care of it. I went online anytime I had a problem and found a solution." I think that we should have an icon for symptoms and solutions. I found a site that offers "quick tips" for all Hep C and drug side effects. Instead of the patient googling it, they can turn to their app for a solution and this way, they'll have a go-to place for all Hep C questions.
- Have a forum for research articles up-and-coming treatments. For example, at this point, we could add Sofosbuvir. But, in a few months, there may be new research and new drug launch dates....it'll go in the forum.
Overall, it was a very educational experience. The best part of the group was hearing how the patients were coping with HCV. The most inspirational patient was a man who turned to God after an unsuccessful treatment. It renewed his faith and he's optimistic for the future. I think that having a Support/Socialize icon on the app will encourage patients to stick with their regimen, find alliances in the fight against HCV, and find faith, not necessarily in the Biblical sense, but in a hope for life--for a new life.