Let the patient revolution begin
BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f2614 (Published 14 May 2013) Cite this as: BMJ 2013;346:f2614
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It is good to see the BMJ promoting patient involvement in order to improve healthcare. [1] But do we need a revolution to do so? Revolutions tend to throw out much that is good along with the bad, whereas evolution, although much less exciting, tends to take a calmer look at what is currently happening. I believe we should study the history of patient and public involvement and become aware of what is currently being undertaken so that we can improve what we find. There is a huge amount of lively and useful activity occurring: in research; in shared decision-making; in delivery and organisation; locally, nationally and internationally. But its pace is rapid, so it would be difficult to do it justice to give a true, current comprehensive picture.
Healthcare has changed. Today there is an increasing amount of preventative medicine being promoted, in which the medical profession intervenes without a “by your leave” in the lives of ordinary people going about their daily business. These people are citizens, not `patients`. The NHS belongs to us all: the rights and responsibility for having a say should be equal, requiring no `empowerment`.
It seems to me that the medical profession views everyone else (the others) as `patients`, [1] thereby placing `us` in another camp, requiring overtures (from them) to work `in partnership`, and be `empowered` to do so. So, as an Independent Citizen Advocate for Quality in Research and Healthcare I`d prefer citizens to be able to bring their expertise and experience round the table, whether they be qualified health professionals or not. Empowerment is inappropriate for equal citizens. But I would be prepared to adopt the revolutionary motto: “Liberty, equality, fraternity!” but draw the line at chopping off heads.
`Ordinary` citizens have built up a professionalism of their own, often acquired ad hoc through close dialogue and co-operation with health professionals, both individually and as groups. [2] It is not uncommon for them to be criticised for becoming `professionals` - whatever that may mean! But how can anyone be effective if they don`t work hard to acquire the fundamental skills of their trade? [3][4]
Citizens have a common basis, shared responsibilities, common rights – no `them` and `us` please! We need to relate to each other appropriately. “Who needs who?” as Manson and O`Neill ask. [5]
[1] Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ 2013;126:14
[2] Thornton H. Patients and health professionals working together to improve clinical research: where are we going? European Journal of Cancer. 2006; 42:2454-2458, plus Appendix A. online at doi:10.1016/j.ejca.2006.05.022
[3] Thornton H. The patient`s role in research. (Paper given at The Lancet “Challenge of Breast Cancer” Conference, Brugge, April 1994.) In Health Committee Third Report. Breast Cancer Services. Volume II. Minutes of Evidence and Appendices. London HMSO July 1995. 112-114.
[4] Evans I, Thornton H, Chalmers I, Glasziou P. Testing treatments: better research for better healthcare – Second Edition. Pinter and Martin, London. 2011. ISBN 978-1-905177-48-6
[5] Manson NC, O`Neill O. Rethinking Informed Consent in Bioethics. Cambridge University Press, Cambridge. 2007
Competing interests: No competing interests
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Re: Let the patient revolution begin
BMJ is unique in providing its scientific platform for greater good to happen to the patients in healthcare system. The encouraging interfaces that have been created to engage patient in shaping and getting the best out of the healthcare system may be one of the best ways to revamp healthcare delivery. This will educate the patient about what type of treatment he/she gets, what drugs are given, what type of diagnostic tests are undertaken (are they relevant or necessary?), gain knowledge like keeping records about your medical history and sharing up-to-date details with your medical team.
Your medical history includes any medical conditions and illnesses; immunizations; allergies, reactions and sensitivities; hospitalizations; other doctors treating you; medications and dietary supplements (i.e., vitamins, herbal products).
You and your doctor should agree about exactly what will be done during each step of your care.
Know who will take care of you, how long treatment will last, and how you should feel.
Ask to speak with other people who have undergone a procedure you are considering. They can help you prepare for what to expect and the best ways to recover.
Yet caution must be exercised that patient must know what are his or her limits in influencing say certain medical decisions or hampering the institution or progress of a therapy.
Healthcare system needs to be fixed but it must never be a quick fix, for the benefits that one accrues out of it outweigh its shortcomings. There is no foolproof method in any system – yet medicine is a dynamic field where machines, money and methods may influence decision making process and patient welfare.
Competing interests: No competing interests