On 21 October I was in hospital with a severe cellulitis, with sometimes sky-high fever and as only participatory aspect making an arm available for the much needed antibiotics drip. Although I am home when writing this I am far from recovered as all this (i.e. 3 serious still open wounds in my left leg) comes on top of my neuropathy problems from the cancer 3 years ago and 4 different antibiotics per day make my head spinning 24/7.
Nevertheless, 21 October 2009 was also the day that the new Journal of Participatory Medicine was launched. And I wanted, as soon as I could, to congratulate the editors and authors with this achievement. The Launch Issue offers a large variety of interesting articles, showing the intentions and goals of the journal. Of course we at ICMCC will follow the Journal and link to those articles that are related to health information technology as we have been doing so far with over 150 journals.
I must admit, I have not read all articles of the journal yet, but I have seen very interesting aspects, like the Conceptual and the Ready-to-Go Questions in the article by Kibbe and Kvedar. But I would like to give some quotes from the article by Kate Lorig:
- When we participate in our care, we make our preferences known.
- We should tell our providers how to best to communicate with us, how we prefer to make decisions, our treatment preferences, and the trade-offs that we are willing to accept for better health and what care we wish at the end of life.
- When we participate in our care, we ask questions.
- If we do not understand, we must say so. On the other hand, if the provider starts a long explanation of something we already know, we should also say so.
- When we participate in our care, we follow through on treatment plans.
- If we agree to take a medication, we should take it as prescribed or discuss possible modifications with our provider. If we promise to exercise, we should do it. If we can not or do not follow through we must talk about alternatives with our provider.
- We should make it our business to know about our treatments, including medications and any tests we have had recently.
Lorig K. What it will take to embrace participatory medicine: one patient’s view. J Participat Med. 2009(Oct):Launch Issue
This brought back to me many of my speeches in the past years, where I asked “who is going to tell the patient?”, recently adding the phrase “who is going to tell the provider?”.
A few days before I went into hospital I had a discussion about how to change the education of providers to teach them how to deal with the provider-patient relationship paradigm shift. And there were no objections to the fact that we will have to make major modifications to the way we educate our future doctors, nurses, paramedics, etc.
As you can read back in my speeches, we will have to create a relationship of trust between provider and patient. As it is based on mutual trust, such a partnership should be on equal terms, which can only be realized by sharing equal information, for the caregiver’s experience differs from the patient’s experience.
But the moment I asked the question how we are going to educate the patient, remarks about paternalism came up. And I was back to square one. Despite my illnesses I have been asking myself that question over and over since I started ICMCC: how do we educate the patient?; how do we raise their awareness about their changing role, about the fact that they will have a different responsibility? And it is and will be one of the major issues of ICMCC, how we can use (H)IT not only to facilitate the citizen’s care and cure path but also to facilitate the citizen’s awareness about their new role.
I sincerely hope that the new Journal of Participatory Medicine will play an active role in discovering and exploring ways to educate patients/citizens about the role and responsibility shifts that are going to occur in the coming years and how to cope with these shifts.
I wish the Journal wisdom, excellent authors and a very large readership.
Lodewijk Bos
