What Can Pharma Learn From the Modern Patient?
eyeforpharma speaks to Tom de Bruin, teenage cancer survivor, about his experiences with pharma and social media, both as a patient and as one of the developers behind jimmyteens.tv, a website where teens living with cancer are encouraged to make and share videos about their experiences.
Patients are changing, becoming more knowledgeable and more connected as the digital age continues to mature. One example of the changing nature of physician-patient interaction seen by Tom is the increasing willingness of patients to email their doctors asking for more information.
“A typical seven and a half minute doctor’s appointment is not very long to respond when you’ve just been told you have a serious disease”
Tom explains that “a typical seven and a half minute doctor’s appointment is not very long to respond when you’ve just been told you have a serious disease – sometimes I spend that long deciding about what I want for breakfast! In some cases, patients won’t be able to deal with any issues they might have within this time limit, and when this is the case it is important that they have another way of reaching their doctor. Of course, different doctors respond in different ways to being reached in this way. Some old school doctors are of the opinion that they know it all and are not very open to being questioned by patients, tending to view patient emails as a challenge to their authority. The new school of doctors that we are seeing are more used to the patient as active participant in their own healthcare, and see opportunities for partnership with patients in fighting the disease.”
Tom sees social media as a useful platform for patients to make their voices heard by pharma, although he urges a more open approach to the platform from pharmacos. “Social media is a great way for patients to communicate with each other which leaves open the possibility of anonymity. Some patients can be embarrassed about their disease, but yet still need to vent their emotions to others. I am aware that some pharma companies use data mining to gain insights from these pages, which can tell them a lot about how their medication is being perceived. Yet pharma needs to understand that if they asked closed questions, they will receive limited insight into what patients are actually talking about. Pharma should be receptive and take on board whatever patients want to discuss on social media, whether it is about their brand or not.”
Mobile devices are widely seen as having the potential to revolutionise the relationship between doctors and patients. Tom says one reason for this is that “patients have their mobiles with them at all times, meaning that the mobile device can actually be a better source of information about the patient than the patient themselves! For instance, the patient may not remember the symptom they experienced a few weeks ago, but with a mobile app it becomes possible to log symptoms when they happen, to store this information in the cloud, and to have it accessible to the physician when they need it. The patient will no longer need to remember everything pertinent to his or her case.”
Of course, as Tom points out, the doctor still only has 24 hours in the day, and may not wish to spend all this time accessing emails or patient information. “It will take a shift in thought for doctors to be willing to listen to all of this new information. It is already a little difficult for a doctor to be present with the same intensity as the patient is during the delivery of what could be the worst news of a patient’s life. If mobile apps simply provide mountains of data to sift through, doctors will suffer from an information overload and there is a danger they will be even less present with the individual patients.”
“When I was diagnosed with Hodgkin’s lymphoma, it took me six months before I actively started seeking treatment. Every patient deals with a new disease in a different way”
One thing we can learn from this is that applications developed to help doctors must not simply collect patient data, but must also work towards presenting it in a way that is time-saving, not time-consuming for the doctor.
Lastly, Tom is concerned about pharmaceutical companies that focus too narrowly on their product, and ignore the wider coping processes of patients. “There are lots of things that affect how and when a patient decides to utilize pharmaceuticals. When I was diagnosed with Hodgkin’s lymphoma, it took me six months before I actively started seeking treatment. Every patient deals with a new disease in a different way. Some must go through the process of asking ‘why,’ before eventually accepting their situation. Patients may want to try getting more exercise or improving their diet before resorting to pharmaceuticals, in order to feel like they still have some control over their lives. In this way, individual patients’ coping processes often dictate their relationship to pharma. Then again, if the cancer is in an advanced stage they may not have time to work through their coping algorithm, and will have to skip those steps and move straight to pharmaceuticals.”
A lesson can be learned here about structuring a sensible, effective “beyond the pill” approach: even when patients do turn to medication, one of their main desires is still to remain in control of their lives. Pharma firms would do well to remember this when they design digital materials that help patients cope with their disease; the materials may not even have to deal directly with the disease or the medication, but could support the patient in accomplishing other parts of their “coping algorithm” such as “getting fit” or “eating better,” things that can give the patient hope and empower them to believe that they can make a difference to their health.