Today I was at the MYiHealth conference in Stockholm. I gave a workshop together with Sara Riggare and Eskil Degsell and the topic was Digital Patients leading development of healthcare. We had a great time, and the discussions in our workshop was very inspiring.
I of course listened to many other interesting presentations, e.g. a fascinating discussion about Integrating genomics, proteomics and patient data input data between Jamie Heywood, CEO PatientLikeMe & Mathias Uhlén, professor, KTH. The discussion focused on how much we can learn from mapping the human genome and proteom and how this can in the future be used not only to understand and diagnose illnesses, but also to target treatments to the individual – so called precision medicine. I’m in awe of what is done by these researchers and patient activists to advance our knowledge.
But I also sat there thinking about my father and the pain of loosing him much too soon to that awful kidney cancer tumour that spread through his whole body and killed him slowly and painfully. I thought of how great it could have been if his illness had been discovered earlier – something that may be possible in the future. And if the tumour had been discovered earlier, it would have been fantastic if targeted treatments could have been used to maximise his survival chances and minimize his pain. I really hope that this will be the case in a not too far off future.
In the mean time, I also wish we could use some of the brilliance, funding and enthusiasm to ensure that we support the patients that are here today, struggling today, dying today. It may not be fascinating rocket science, but there is so much we can do with eHealth to lighten the burden of trying to interact with healthcare. eHealth will never take away the profound pain and trauma of watching a loved one die slowly and painfully from cancer. But at least we should be able to ensure that the day-to-day communication with healthcare during such times does not add to the burden.
I have a few simple things on my wish list;
- No more anxious wait at the mail box (yes, the physical outdoor mail box) for days to find out when your next appointment is
- No more searching for contact information for healthcare units responsible for doing the next set of diagnostic examinations (or wondering what the next step is and who is involved)
- No more chasing referrals
- No more hovering over the telephone waiting for that important phonecall, since if you miss it you have no way of calling back but may have to wait another 24 painful hours
- No more anxiety wondering if two (or three or five) different care providers have communicated with each other so that everyone are aware of the latest news
- No more feeling lost in a healthcare system that is not built to ease the journey of patients and their families
It’s not rocket science or big data or artificial intelligence. It may not have a measurable impact on health outcomes or survival rates. But I’m certain it could lift a many unnecessary burdens from the shoulders of patients and their families. And I know we can fix this. So what are we waiting for?
@mariahagglund you have simply and clearly mirrored my wish list, which flashbacks to my dear friend and former colleague dying in the fancy private ward of the Geneva university hospital in May of metastatic breast cancer that had spread to bones, brain, and stomach. Why was her BC not caught Earlier? Why did her protocol not work? If she had discovered the lump today — rather than 9 years ago –would she have a better prognosis? How empty are the promises of personalized medicine for the 1,400 women in Switzerland who will die this year from metastatic breast cancer! How fruitless for these women are the hundreds of millions of euros worth of venture capital funding being poured into the sexy mHealth apps that are pitched ad naseum at countless conferences around the world!