Rapid Responses to:
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Rapid Responses: Rapid Responses published:
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![[Read Rapid Response]](/icons/misc/sectionDOWN.gif)
The involved patient
- Per Hjortdahl (26 March 2004)
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The expert patient - the experience of bmjlearning.com
- Kieran M Walsh (26 March 2004)
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Expert Patient - a case for clear diagnosis
- Jane Bennett (26 March 2004)
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Knowledge together
- María J. Álvarez Pasquín (26 March 2004)
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“Expert Patient”: What’s in a name?
- Michael D E Goodyear (27 March 2004)
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Really “Expert patients” can “empower” doctors
- Renzo Marcolongo, Leopoldo Bonadiman, General Practitioner (28 March 2004)
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Make use of expert patients
- Diana F Pargeter (30 March 2004)
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Expert Patients Indeed!
- Enoch C choi (31 March 2004)
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Expert patient contribution should be at the centre of NHS care.
- Kumar Rajiv (31 March 2004)
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Who's Afraid Of The Expert Patient ?
- Joseph .C . Obi (31 March 2004)
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Let's say it "Concerned Patients"
- Takeo Saio (31 March 2004)
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I'm no expert!
- Julia C Grier (1 April 2004)
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Ipse dixit !
- Giuseppe Vetrugno, Achille M. Luongo, Fidelia Cascini, Francesco Ausania, Leonardo Scorcelletti, and Ernesto D'Aloja (1 April 2004)
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"Expert Patient" - dream or nightmare?
- Margaret C Anderson (2 April 2004)
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'Expert patient' is good, 'Interfering patient' is bad...
- Farhan S Imran (2 April 2004)
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Expert Patients Could be ``Consearchers``
- Tibor Szekely (7 November 2004)
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Through the Lens of a Patient
- Catherine M. Beckman, M.A. (14 March 2006)
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Per Hjortdahl, professor Department of general practice, University of Oslo, 0317 Oslo, Norway
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Shaw and Baker Thank you for raising this important but potentially volatile issue. In my country (as in most other places I believe), the "expert patient" is still a rarity and looked upon with curiosity. We know that they are there, but not quite what to do with them. This situation may very well explode, with patients demanding more than we can handle. This will harm the medical profession as much as the patients. But as you so well point out this challenge may be turned into something positive. The first step in this process is to get the terminology straight, so we know what we are discussing. I fully support your suggestion of "The involved patient", it should be understood by most patients as well as doctors. It is even easily translated into Norwegian, as into most other languages, thus having the potential for becoming a universal term. The next step however is even more important; how to defuse, or turning this potential explosive situation into something constructive in the doctor-patient relationship. As a medical profession we need to take an active part in this process. I am thus much interested in hearing other peoples ideas of how best to proceed. Per Hjortdahl, professor
Competing interests: None declared |
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Kieran M Walsh, Editorial Registrar, bmjlearning.com BMA House, Tavistock Square, London WC1H 9JR.
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Dear Sir, bmjlearning.com is an educational website for GPs. Since we have launched it, we have published one learning module on the role of the expert patient. (1) This was written by an expert patient and outlined his experiences and feelings about his role. It was written in a read reflect respond format where the reader is encouraged to respond to the module by email. Since publication seven doctors have responded. All of them were positive about the expert patient programme. None of them saw expert patients as a threat. Two doctors asked questions about how best to recruit and work with expert patients. One commented on the need for more funding. Perhaps this reflects that doctors don't see expert patients as a threat when they find out exactly what they are going to do. And I quite like the name expert patient. It suggests patients who can help others with their knowledge, skills and experience. It does exactly what it says on the tin. Yours Sincerely, Kieran Walsh. 1. Moore P http://bmjlearning.com/planrecord/servlet/ResourceSearchServlet?keyWord=&resourceId=5001053&viewResource= (accessed 26.3.04) Competing interests: Kieran Walsh works for bmjlearning.com. This is an educational website for GPs and has published one module written by an expert patient. |
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Jane Bennett, Retired Practice Manager CH2 3RD
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As a very experienced practice manager, only to have my career cut short by the complex CNS form of antiphospholipid syndrome, I would urge all Physicians to welcome patients who are well informed and well read in chronic illness & wish to share that expertise. Obviously there is a difference in patients who present to GPs and Consultants, armed with reams of web pages, demanding treatment ad hoc, compared to the patient such as myself who has a huge interest in the research,disease structure and therapy of this particular chronic illness. I enjoy a very open and honest relationship with my GP practice, consultants involved in my care and other professionals that I may meet when acutely ill in hopsital. There is no doubt that my knowledge has aided diagnosis,(e.g. identification of a PE) assisted with clarification & strengthened the case for self- monitoring anticoagulation, working as part of the medical team to formulate a safe protocol. The term expert patient will probably not go away and acceptance in some areas of medicine will always be controversial but the future is certainly in evolution towards a higher degree of patient involvement, working as part of the medical team towards the very best management of chronic diseases at all levels of clinical care. Competing interests: None declared |
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María J. Álvarez Pasquín, Family physician EAP Santa Hortensia. c/ Santa Hortensia 14 .28002 Madrid. Spain.
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Dear Sir: I agree with Dr. Hjortdahl that this issue is volatile but very important(1). All of us have the experience of patients with a better knowledge in a particular field which can disturb us when they come to our clinic. Sometimes they really know more than we do, but not always they understand the information. Our task is to switch information into practice. How? It is important to explore wherefrom the patient has got his/her wisdom, how confident it is and how much the patient relies on it(2) and to open the way to discuss all doubts. As a patient of mine said: “No question is a nonsense”. Physicians, we, have to learn to say “I do not know at all, we will learn about your problem together.” The spectrum is changing. There are several types of patients, the involved patient; the expert patient- not so rare, everyday more, oft collaborative(3) -; the sceptical patient; the victim and many more. There are several types of doctors too. The one “what you say has no value”; the nervous one, who prefers not to discuss and always looks for a second opinion; the paternalistic type; the new one who reassures patients, talks about critical aspects and controls clinical interview and handles comfortable with informatics; and some more. Internet and the new technologies of information and communication bring new ways to understand, discuss, handle and to live an essential chapter of our lives, Health. The way we interact with our patients is the critical point to manage them in trust, also with the “involved” and the “expert” kinds. The need of collaboration between clinicians and patients to create knowledge together(4) is plain. Time has come down. 1 Hjortdahl P The involved patient. Rapid Responses. bmj.com, 26 Mar 2004 2 Shaw J; Baker M. "Expert patient"—dream or nightmare? BMJ 2004;328:723-724 (27 March), doi:10.1136/bmj.328.7442.723 3 Walsh KM. The expert patient - the experience of bmjlearning.com.bmj.com, 26 Mar 2004 4 Jadad AR. Promoting partnerships: challenges for the internet age BMJ 1999;319:761-764 Competing interests: Webmaster Todosvacunados.com, multidisciplinary website about vaccines |
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Michael D E Goodyear, Assistant Professor Division of Medical Oncology, Dept of Medicine, Dalhousie University , Halifax, NS, CANADA B3H 2Y9
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Shaw and Baker (1) have appropriately identified the barriers to implementation of new programmes (2), underscoring the need for extensive early stakeholder consultation. None of the ideas in this programme are really new, but flow in a natural evolution of our understanding of health professional-patient relationships. It is unfortunate that we have strayed so far from Hippocrates that some have depicted this to be competitive or antagonistic. However in a power imbalance such interpretations are, perhaps, inevitable (3-5). The conceptual evolution of health care professional-patient relationships has left us with a plethora of terminology. We have moved through shared decision making, doctor-patient partnerships and self- management, and now we have the Expert Patient, which as the authors point out means many different things to different people. To resolve the question asked, we need to distinguish between the graduate of a tailored programme, and a new way of looking at an individual patient’s position in a power relationship. Where imbalances in relationships occur, affirmative correction often assumes intimidating connotations. There was never any intention in retreating from parentism (the politically correct term for paternalism) to create an equally imbalanced relationship in the converse sense. Bennet probably laid the foundations for this development, and his pronouncement “The greatest benefit could come in the future if patients could take on more responsibility for their bodies and minds, in other words learn to activate the potential for help and healing that is latent within themselves. Doctors then may come to acknowledge, perhaps through a greater openness in their own lives, that they too are needy and vulnerable along with the patient, and that doctoring is something of a joint venture between patient and healer, in which the doctor serves as the guide” (6) is much cited. It is probably no accident that his book is entitled Patients and their Doctors, and not the other way round. Who initiates the consultation? However the credit for the scientific exploration of the concept is Lorig’s (7), although the term ‘expert patient’ emerged from an NHS White Paper in 1999 (8) and is now, I suspect, sufficiently embedded in our culture that it would be difficult to change. At it’s roots, it acknowledges a fundamental truth, that only patients can be ‘experts’ in terms of assessing the impact of illness on their own lives, and expressing their individual values, utilities and preferences. Those values are very personalised and not intuitive (9). That is a case for the retention of ‘expert’. But is the term ‘expert’ helpful, and what does it really mean? Evidence-based clinicians and epidemiologists have tended to shy away from the word since Sackett unintentionally (?) became the expert on not being an expert (10). Thus the term does have its limitations, but is there a better one? A self- managing patient (11) is rather an indigestible concept. ‘Autonomous’ (12) does at least take us back to the first of the four principles of biomedical ethics (13), and reflects our desire to restore this entity in medicine. However Say and Thomson note that physicians perform relatively poorly in assessing the patient’s degree of desired autonomy. Shaw and Baker prefer ‘involved’ as indicative of a two-way interaction, which is laudable (14), but I suspect the term ‘expert’ is here to stay for the time being. Their concern seems to lie in a perception of ‘expert’ as intimidating. We need to ask ourselves why we are intimidated by the concept of the ‘expert’? Is it because we confuse the expert with authority? Authority lies in the evidence, not in the individual. Another concern of Shaw and Baker is how many people will be affected by the programme for it to make a measurable difference in community health statistics. One could argue that this is an analogy of teaching a man to fish. On the other hand we should recognise that as originally conceived it was part of a wider strategy. The Healthy Citizens programme was supposed to provide the citizenry with the information needed to make informed choices. As physicians we are constantly reinventing our roles (15), so perhaps we should learn to live with this term for now till we have become more accustomed to it. Although the Chief Medical Officer outlined a number of target diseases in his 2001 report (16) I suspect that the dynamics are going to be partly reflected in the context. That list included cancer, my own area of practice, although this has not been a priority (17). In oncology the defining philosophy is likely to be that of Maurice Slevin “It may be that the only people who can evaluate such life and death decisions are those faced with them.” (18). To answer the second question raised by Shaw and Baker, dream or nightmare?, Wilson has criticised the concept as limited in the sense of being a one way street aimed at the patient. Indeed the programme was designed as empowerment in a context of traditional imbalance. Wilson is correct that for it to succeed and overcome the perceived barriers it must also address the need to change the attitudes of health professionals. The concept of the expert patient is neither a dream nor a nightmare, it is a belated reality that is here to stay. Bennet would say that it is merely a historical rebalancing act, restoring traditional relationships between the wounded and the healer. References 1. Shaw J, Baker M. “Expert patient"—dream or nightmare? BMJ 2004;328:723-724 (27 March), doi:10.1136/bmj.328.7442.723 2. Tattersall RL. The expert patient: a new approach to chronic disease management for the twenty-first century. Clin Med. 2002 May- Jun;2(3):227-9. 3. Say RE, Thomson R. The importance of patient preferences in treatment decisions--challenges for doctors. BMJ. 2003 Sep 6;327(7414):542 -5. 4. Wilson PM. A policy analysis of the Expert Patient in the United Kingdom: self-care as an expression of pastoral power? Health Soc Care Community. 2001 May;9(3):134-42. 5. Bennet, G: Doctors and their Patients: the journey through medical care. London Bailliere Tindall 1979. ISBN: 0702007455 Page 133ff. 6. Bennet op cit page 187. 7. Lorig K. Partnerships between expert patients and physicians. Lancet. 2002 Mar 9;359(9309):814-5. 8. Saving Lives: Our Healthier Nation. Department of Health, London 1999. http://www.dh.gov.uk/assetRoot/04/04/93/29/04049329.pdf (accessed March 26 2004). 9. Weeks JC. Preferences of older cancer patients: can you judge a book by its cover? J Natl Cancer Inst. 1994 Dec 7;86(23):1743-4. 10. Sackett DL. Second thoughts. Proposals for the health sciences-- I. Compulsory retirement for experts. J Chronic Dis. 1983;36(7):545-7. 11. Lorig KR, Holman H. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003 Aug;26(1):1-7. 12. Coulter A. The autonomous patient—ending paternalism in medical care. London: Nuffield Trust, 2002. 13. Beauchamp TL, Childress JF. Principles of Biomedical Ethics. 5th ed. Oxford, New York 2001. ISBN: 0195143329 14. Bennet op cit page 182 15. Reichard P. To be a teacher, a tutor and a friend: the physician's role according to the Stockholm Diabetes Intervention Study (SDIS). Patient Educ Couns. 1996 Dec;29(3):231-5. 16. Department of Health. The expert patient: a new approach to chronic disease management in the 21st century. London: Stationery Office, 2001. 17. http://www.publications.doh.gov.uk/cmo/progress/expertpatient/index.htm (accessed March 26 2003) 18. Slevin ML, Stubbs L, Plant HJ, Wilson P, Gregory WM, Armes PJ, Downer SM. Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. BMJ. 1990 Jun 2;300(6737):1458-60. Competing interests: A wounded healer |
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Renzo Marcolongo, Senior Staff Physician Azienda Ospedaliera di Padova, via Giustiniani 2, 35128, Padova, Italy, Leopoldo Bonadiman, General Practitioner
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When talking about doctors-patients relationships, we usually focus our attention on patients’ needs, frequently forgetting the human and professional perspective of doctors. Indeed, the incessant information pressure exerted by media has greatly improved the health literacy of patients. Consequently, by promoting their knowledge and expertise, information has also increased the independence of patients, making them more demanding with their doctors. Nevertheless, at the same time, doctors working in the National Health Service, besides patients, have to deal also with an even more exigent cost-saving health policy. In our opinion, these two sometimes conflicting interests induce many doctors to see patients as potential enemies rather than allies. As a result, instead of reinforcing partnership and seeking solidarity with their patients, many doctors become prone to adopt a “self-defensive” attitude, fearing the increase in both the workload and NHS costs. We think that in order to overcome distrust and improve confident partnership, doctors should learn to work “with” rather than “for” patients. However, this can be possible only if we provide them and other healthcare personnel with adequate skills. In this view, a careful professional training to Therapeutic Patient Education (TPE) skills could help healthcare professionals to change their attitude toward patients. In turn, by building up in patients and their cares a "real expertise" and empowerment, TPE is likely to promote a lasting and successful partnership with healthcare personnel. Thus, by allowing the rational development and management of both professional and lay human resources involved in the disease, TPE can also help the “sustainable” development of NHS. At the same time, TPE preserves the human dimension of medicine and respects the needs of all people involved. In conclusion, we think that a skilled educational and therapeutic approach to patients is likely to raise the empowerment of both patients and doctors. From the Therapeutic Patient Education Laboratory, Padua University Hospital, Italy Competing interests: None declared |
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Diana F Pargeter, retired statistician Cambridge CB1 6ED
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There are many types of patient, with varying levels of desire to be involved in decisions relating to their treatment and lifestyle. Assuming a patient wants to help himself as much as he can, there are many different ways of becoming involved. As an example of one extreme, no doctor is likely to question the advisability of having a tetraplegic learn how to avoid pressure sores, contractures and autonomic dysreflexia, and manage his bowels and bladder as well as possible. The strategies for coping with these have not changed a very great deal over recent years, although some of the equipment available to help has, and the knowledge is likely to save the patient much grief, and the NHS a huge amount of money. A completely different scenario might involve a patient who hears he has sarcoidosis. It is rare enough for him probably not to have heard of it, so he tries to find out what he can. He is likely to have been prescribed steroids or been told it will go away by itself. On the other hand, his investigations tell him that steroids are a decades old band-aid measure that only suppress symptoms and have serious side effects. Worse, even if the problem appears to go away for a while it is likely to resurface years later, maybe in a vital organ. He might at this stage cave in and accept what his local clinicians are saying, or he might search to see if recent research offers an up-and-coming alternative. A patient assimilating and relaying up-to-date research to a clinician could save the latter an enormous amount of time, and the work be equivalent to a project costing thousands of pounds. What's more, if he were investigating sarcoidosis, the patient could indeed have come across a new and serious alternative to steroids (Marshall (1)(2)(3) and Cantwell(4)). He will naturally go on to present what he believes to be a relatively cheap and infinitely better treatment than steroids to his consultant. He does not mean to make this person feel threatened, he is simply trying to help himself and others in a similar position, and is aware that it is unusual for any practitioner to have weeks to spend on such tasks. This second patient is without doubt "expert", rather than "involved". He probably knows things his doctors do not. Interestingly, it is frequently GPs (who know their patients well) who are happy to hear of new developments in this way, but consultants less so. Unfortunately for the patients, many GPs feel unable to use their own initiative once their client is involved with a "specialist". It can only be to everyone's advantage for all doctors and patients to communicate with and listen to each other. Anyone can become expert in something, but nobody knows everything and we must share our own expertise yet gain from the knowledge of others. A truly expert patient should never be classified as a nightmare one, and dismissed. He could be providing the key to the (assumed) doctor's dream of curing people. 1. Marshall TG, Marshall FE: Sarcoidosis Succumbs to Antibiotics - Implications for Autoimmune Disease. Autoimmunity Reviews. In press (Nov 19, 2003) URL http://dx.doi.org/10.1016/j.autrev.2003.10.001 2. Marshall TG, Marshall FE: Antibiotics in Sarcoidosis – Reflections on the First Year. JOIMR 2003;1(3):2 Available from URL http://www.joimr.org/phorum/read.php?f=2&i=38&t=38 3. Marshall TG, Marshall FE: The Science points to Angiotensin II and 1,25-dihydroxyvitamin D. JOIMR 2003;1(2):3 Available from URL http://www.joimr.org/phorum/read.php?f=2&i=24&t=24 4. Cantwell AR: Bacteria in Sarcoidosis and a Rationale for Antibiotic Therapy in this Disease. JOIMR 2003;1(5):1 Available from http://www.joimr.org/phorum/read.php?f=2&i=48&t=48 Competing interests: None declared |
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Enoch C choi, PAMF 94306
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The following response is quoted from my weblog post at which I invite
comments. It is my personal opinion, not my employers.
Family Medicine Notes quotes a recent BMJ editorial: "Expert Patient"
and Jacob comments: "Shared decision-making - getting some "push-back" from physicians. Hmm.." British docs bristle at these 2000 UK patients who have undergone 6 weeks of training in self-mangement, worrying that they'll usurp their authority. The article quotes an example of patients carrying in printouts from the internet - a very common situation I face here in silicon valley, with patients who see me in urgent care who can't wait for their primary care docs to see them. But I actually welcome their input. I found this quote very appealing:In a different and more important sense all patients and carers are experts, regardless of how much medical knowledge they may have. That is because of the experience of living with their condition and their personal beliefs, priorities, and attitudes to risk... Doctors need to act on what they already know—that all patients are experts, however uninformed or misinformed they may be about health issues. Patients' expertise is valuable because by understanding the patient's views and situation, the doctor is better equipped to identify a solution that will lead to a successful outcome, however defined. The minority of patients who have the resources to find out about their illness and want to take an active part in managing their own care are to be welcomed as allies and partners. Long live expert patientsI disagree that a new definition is necessary. Joanne Shaw and Mary Baker suggest the label of "involved" or perhaps "autonomous," or "resourceful." I think that "expert patients" only offends medical professionals, and it's these professionals that are deluding themselves thinking that their patients consider themselves anything other than experts. In fact I was an advisor for my wife, Tania Choi's 2001 masters thesis at Stanford which was named just that: "Expert Patient" When many patients go to their doctor about their medical condition, they don't realize that the process of diagnosis begins with the physician learning from them about their symptoms. "Expert Patient" recognizes that patients’ knowledge and articulation of their symptoms is crucial to accurate diagnosis and treatment. It is a patient education tool that offers a structured process of symptom identification, articulation and tracking. Throughout the interaction, the tool maps the physician's mental model to the patient's by consciously introducing the latter to the doctor's vocabulary, protocol, and most importantly, rationale behind medical inquiry. "Expert Patient" prepares patients to facilitate their doctor’s diagnosis by compiling the relevant information and questions. Studies and research for this product include ethnographic studies of triage nurses, interviews with physicians and usability studies with live patients.When I consider what would excite me most about a patient considering themselves an expert patient, I think of the following: - they feel control and ownership of understanding their medical condition - they feel respected by the professionals they seek out, in that they are the only ones to accurately understand their experience - they find professionals that are willing to listen and wait for the completion of their stories before jumping to conclusions - they come to trust these professionals and consider their advice as unbiased and in their best interest Expert patients indeed! May there be more and more of them. Competing interests: None declared |
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Kumar Rajiv, Associate Specialist in General Medicine Peterborough Hospitals NHS Trust,Thorpe Road, Peterborough,Cambridgeshire,England,UK, PE3 6DA
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Dear Sir The National health Service right from its inception has followed the ethos of clinical care delivered equitably at the point of care.In the modern times NHS has become even more patient centred and rightly so.The important observation is that it is not 'one size fits all' situation in the delivery of clinical care and we should not forget the Nightingale principle of 'first do no harm'.We as practising NHS Doctors put the patient first.This can be sometimes difficult as the care has to be evidence-based and affordable to the local service provider.This may become a balancing act and patient participation becomes crucial in the care plan.The expectations of the patients also has to be met.This should be a realistic interaction and an exercise borne out of 'clinical expertise'.I believe that clinical expertise includes the case circumstances and patient's belief and expectations.This is where the knowledgeable or expert patients have a pivotal role to play;so as to keep the expectations realistic and make rational and appropriate use of resources on a case by case basis within the framework of evidence-based medicine.The outcomes of an intervention may also be better understood by the well informed and experienced patient so as to spread the information to the newer patients who would then be more aware of what to expect and whether to accept the treatments offered.This realism inspired by an expert patient to the newer patients may also reduce the complaints rate as well as improve the services where it ought to and increase the satisfaction out of subsequent consultations.The expert patient should not however influence the medical decisions or diagnosis.The role should be more of fellow patient education and imparting their first hand experiences to them as a matter of 'buddy care'. Perhaps one could get some willing expert patients to invest their time and skills in our Hospitals as Volunteer helpers.This may reduce the intensity of the work and make better use of services in the NHS towards improved outcome. Dr Kumar Rajiv Competing interests: None declared |
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Joseph .C . Obi, Chief Consultant WellnessClinics.co.uk
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So What , if 'Expert Patients' arrive 'en masse' at your wee little clinic , with a massive dossier of the latest Innovative Therapies ? So What, if they politely suggest to you that it is 'high time' for you to re-check their Serum Theophylline Levels ? So What, if they confidently ask you to refer them for an 'Upper GI Endoscopy', when your Famotidine does not seem to be relieving them of their Intractible Dyspepsia ? Do not despair...Always see the brighter side of Life...'Change with the Times'. Education and Empowerment can only be a good thing...and I cannot but wonder why we cannot all be grateful enough to learn certain things from our fellow citizens...whatever their academic calling. Competing interests: Dr Joseph Chikelue Obi MBBS MD MPH DSc FRIPH FACAM is also the Chairman of the General Wellness Assembly (GWA); an International Professional Body for Independent Wellness Consultants.He has recently just accepted an unpaid role as an 'NHS Champion' for the rights of Older People ;and also humbly invented the 'Omnipill'. |
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Takeo Saio, Fuji Toranomon Health PromotionCenter 17-1, Kawashimata, Gotemba, 455-0012, Japan
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I am one of the early advocate of public understanding of science(PUS) in medicine in Japan. I am working as a internist in rulal area and as a psychiatrist in urban region. In both location, I often meet very resourceful patients who know much of medical specialized knowledge in the context of medical science. Their backgrounds are not specified intellectual occupation. Most of them are high school students, ex-school teachers, farmers, public servant, etc... they are merely ordinary people. If teaching patient some special knowledge is thought as a "sin"(by doctors) , I dare to say teaching them is not needed because they already have been cultivated. Not few patients already know more than us. In the age of transparent medical practice, the mission of medical profession is, I think, not monopolizing medical knowledge but democratizing medicine by means of conversation with patients. We medical profession must become pupils in front of expert and resourceful patients because the teachers(patients) are concerned about medical practice and they already know much more medicine as science. So I call expert patients as concerned patients. They have concerns, are concerned and concerning. Competing interests: None declared |
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Julia C Grier, [patient] Belfast, N Ireland BT8 7PG
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I'm guilty! Since being diagnosed with sarcoidosis, I've turned into one of those dreaded internet-scouring patients who present their docs with a sheaf of downloaded research papers. But I'm not an expert - call me a fellow researcher, if you will, with a particularly strong motivation to succeed at the job. I think it must be infuriating for someone who has spent many years in medical training, and even more gaining experience, to find that an untrained patient has notions of how they want to be treated! But if someone came to me in my own professional field and told me of new research that I hadn't yet encountered, I hope - I do hope - I would be able to accept that they had the time and motivation to find out things I didn't know, and I hope - I do hope - I would be able to assess this new information impartially, without feeling that my expertise was being threatened. And having discovered the antibiotic therapy for sarcoidosis(1)(2) mentioned by Diana Pargeter(3), which is having huge success in trials, I'm thankful for a humble, open-minded GP who was prepared to give me the antibiotic, even before the trials are completed. I also sympathise with his reluctance to give me the other half of the treatment programme, the Angiotensin Receptor Blocker Olmesartan medoxomil, as the treatment requires it to be taken at a higher dosage than that normally prescribed. He's the expert, and I respect his experienced judgement. There is only one medical thing I'm an expert in, and that's how my condition affects me. I'm the only one who has the necessary knowledge of how distressing the disease is to me (sarcoid is frustrating in that the sufferer often doesn't look ill enough for treatment). And I know I don't want to go on with endless tests and "monitoring", while hearing of others who are experiencing such relief from this simple treatment(4). If it's a choice between the untreated condition, with the eventual organ damage that's likely to cause, or steroids, with the inevitable damage they do, or trying this new treatment, I reckon the third option has the lowest risk. Especially as another thing I've learned from my wanderings round the internet is that this disease doesn't go away of its own accord, the way medical students are still being taught. So far, after just a few weeks on the antibiotic without the ARB, my condition has enormously improved and I know I'm on the right track. But increasing the dose of antibiotic enough to kill all my bugs is inducing Herxheimer reaction, and I don't feel it's safe to do this without the protective effect of the ARB. Stalemate. Continued suffering. So I appeal to all you medics: stay humble, stay alert to new research, even if it is presented to you by an unskilled, untrained, common-or-garden patient! 1. Marshall TG, Marshall FE:Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmunity Reviews, in press, doi:10.1016/j.autrev.2003.10.001 Available from URL http://dx.doi.org/10.1016/j.autrev.2003.10.001 2. Marshall TG, Marshall FE: Antibiotics in Sarcoidosis - Reflections on the First Year. JOIMR 2003;1(3):2 Available from URL http://www.joimr.org/phorum/read.php?f=2&i=38&t=38 3. Make Use of Expert Patients, Diana F Pargeter, bmj.com Rapid Responses, 29/03/04 4. See www.sarcinfo.com for their experiences, especially the thread on "Success stories". Competing interests: None declared |
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Giuseppe Vetrugno, Resident Policlinico Gemelli. Rome, 00168, Italy, Achille M. Luongo, Fidelia Cascini, Francesco Ausania, Leonardo Scorcelletti, and Ernesto D'Aloja
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Dear editor, the view that a patient by his/her own should care after his/her health has been so far well metabolised by medical world. This attitude has been also extended to the fact that an ‘unskilled’ patient may have free access to several classes of drugs and treatments, becoming physician and pharmacist of himself, even when the drug effectiveness is still under scientific discussion – such as homeopathy and other ‘non conventional’ cures – and the choice certainly bereaves the patient of more effective treatments. From this point of view it is hard to believe that the idea of an ‘expert’ patient (1) can frighten medical professionists. The main issue, indeed, to be debated is not whether an ‘expert’ patient has the right to autonomously decide the treatment to be applied or to manage by his/her own the course of his/her chronic disease but the objective criteria to be employed to evaluate if the patient has to be really considered ‘expert’. It seems to us that this task is really tough to achieve even for the health professionists: scientific and medical knowledges proceed in such a tumultuous way that an effective updating, although the invaluable contribution of scientific literature and medical congresses, appears to the most to be a chimera. On the other hand, several medical text-books are old before their time. And the unresolved issue of the conflict of interests can lead a physicians association – been funded by pharmaceutical companies – to suggest their members to prescribe a therapy – based on the use of the granting company drug, even when the clinical efficacy is still under evaluation(2). Would a patient be so expert to unravel all these issues in order to autonomously decide the best for his/her health? And how much will the mass-media widespread pharmaceutical propaganda influence his/her ‘experience’ and his/her choice ability? For Aristotle, the Greek philosopher, it was not so easy to know ‘what is good for the health; though even there, while it is easy to know that honey, wine, hellebore, cautery and the use of the knife are so, to know how, to whom and when these should be applied with the view to producing health, is not less an achievement than that of being a physician”(3). And if to becoming an expert physician many years of studying could not be enough, should be several hours of meeting and of reading pharmaceutical leaflets sufficient to let a patient to be ‘expert’? “Even medical men do not seem to be made by a study of text-books. Yet people try, at any rate, to state not only the treatments, but also how particular classes of people can be cured and should be treated – distinguishing the various habits of body; but while this seems useful to experienced people, to the inexperienced it is valueless’ (4). It could not be denied that patients suffering chronic diseases, whenever well informed and trained on how to manage their illness, show a better clinical course, being less frequently hospitalised(5). We should therefore address these classes of patient as ‘trained’ or ‘exercised’ patients - being their skillness and ability the fruit of a prolonged period of clinical training up to ridding themselves of medical assistance - instead of the so ambiguous definition of ‘expert patient’ leading to so many misunderstandings. Bibliography 1. Shaw G, Baker M, ‘Expert patient’ – dream or nightmare?, BMJ 2004; 328: 723-724. 2. Lenzer J Alteplase for stroke: money and optimistic claims buttress the “brain attack” campaign, BMJ 2002; 324: 723-729. 3. Aristotle, The Nichomachean Ethics, Book V, Clarendon Press, 1908, in http://nothingistic.org/ library/aristotle/nichomachean/nichomachean16.html. 4. Aristotle, The Nichomachean Ethics, Book X, Clarendon Press, 1908, in http://nothingistic.org/ library/aristotle/nichomachean/nichomachean33.html#chapter. 5. Lorig KR, Sobel DS et al., Evidence suggesting that a chronic disease self-management programme can improve health status while reducing hospitalisation. A randomized trial. Med. Care 1999; 37: 5-14. Competing interests: None declared |
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Margaret C Anderson, Patient Retired
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This piece was an eye-opener, and it explained why some members of the Expert Patient Programme group undergoing a course locally were having difficulty in communicating with doctors and other health professionals. It had never occurred to us that the description 'expert' applied to patients might put us in the 'heart-sink' category in some practices! We were a mixed group of all ages and various conditions, but, without exception, all of us wanted to learn to manage our conditions better and to establish good therapeutic partnerships with those trying to help us. Neither 'autonomous', resourceful' nor 'involved' seems to hit quite the right note, and for several reasons I believe we should stick to 'expert' and trust that time will show that we can make a valuable contribution to our care, and convince doctors that there is no intention to denigrate doctors or their skills. After all, if I go to the garage complaining that my car pulls to the left, or seek advice because a crack in my house is widening, the motor engineer and the surveyor will take my observations seriously and make them the starting point for investigation. Those of us with disabilities or a chronic disease usually know far more about them than we do our car or house, and have learnt a good deal about how to deal with problems that can arise. If we come from a minority group, say survivors of paralytic polioencephalitis, we may well know more than the average GP who, unless he has worked in Africa or India is unlikely to have seen the disease in its acute stage, and may not be familiar with its sequelae, including how they will impinge on later accident/illness and treatment. In such cases, we truly are 'expert' patients, and it is to be hoped that doctors would welcome the information and suggestions we can provide, and not feel that they are under attack for such is not the case. Doctors cannot be expected to be experts on all fronts, and no sensible patient expects it, but is grateful for their efforts and support in trying to alleviate pain and distress, slow down deterioration, improve the quality of life, or deal with other aspects of the situation. I owe a great debt to my treating physicians down the years, most of whom have become friends as well as mentors -although being a polio survivor later poisoned by pesticides and solvents and left sensitized to a wide range of chemicals (including anaesthetics and medication) I am an unintentionally awkward customer. As fresh research and information appeared, they explained how it concerned me, helping me understand what I was up against, and then to set realistic goals and devise coping strategies to meet them. I am therefore wholeheartedly in favour of the Expert Patient Programme and wish it every success. It may need 'fine tuning', but in principle I believe it has much to offer all involved. The 21st century has thrown up a lot of new problems and challenges for healers and patients, and the technology to treat them, or even to diagnose them, has frequently not caught up with the technology creating them. Far from being either a dream or a nightmare, could not the Expert Patient Programme become a practical step forward in tackling these issues, and also help mend the doctor/patient relationship which was undermined when health became an industry and 'care' became 'managed' (too often not be clinicians)? Competing interests: Joanne Shaw suggested I submit the following response, which I had sent to her |
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Farhan S Imran, Honourary Observer Cardiology St. Mary's Hospital, NHS trust, Praed Street, London, W2 1NY
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The 'Expert Patient' isn't something to be bothered about as long as he/she understands that his/her knowledge about the subject is just the tip of the iceberg. Searching the internet or going through several medical magazines by the patient can never replace the comprehensive understanding of the subject by a doctor. The patient may find out a lot about his/her medical problem and may make suggestions about how to treat it but the doctor is the one who is aware of all the different aspects involved, be it the interactions of different drugs with each other or the suitability of a specific patient to undergo any of the several treatment options available. The 'Expert Patient' is a challenge to the communication skills and patient dealings of the doctor. A good doctor would appreciate a patient's knowledge about his/her medical condition and at the same time would let the patient know clearly that the reason he/she came to the doctor was his/her inadequate knowledge not about the current medical condition but of the overall curriculum of the medical science. For the sake of analogy, I know the exact ingredients of a Big Mac Burger and every now and then claim that I can make one flawlessly but still I go to McDonald's to buy one, eat it and appreciate it without ever saying that the cook at the restaurant did not do as good a job as I can at my own kitchen. Competing interests: None declared |
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Tibor Szekely, Chemical Engineer Con-search, Independent Research Group
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I read with great enthusiasm your paper and I learned a term that I am an expert patient. I would like to move the concept however one step further; while clinicians do research we consumers engage in consearch a term I like to introduce for consumer initiated research. Consearchers and researchers are standing in an almost identical course however for example not to use a graphic presentation to describe a lifecourse of on illness is something a consearcher would like to change. Our tiny research group consists of Chemical Engineer, Biochemist and Pharmaceutical Sales Representative by profession, patients, family members and involved health care professionals by motivation. We use patient insights and interdisciplinary medical skills in our work. We introduced computer generated 3D chemical structures to generate original data, we published/presented in psychiatry, neurology and endocrinology in the form of letters, posters and oral-slide presentation. After all James and Fraud also been consearchears. Tibor Szekely ChemEng President Con-search, Independent Research Group 39-30 59th St #B3 Woodside NY 11377 E-mail: Con-search@msn.com Competing interests: None declared |
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Catherine M. Beckman, M.A., Writer Home 80906
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When a science filmmaker from Australia told me recently that he has been hearing the term "expert patient," he wondered if it fit with what I have been seeking for the past few years.
As a fourteen year heart transplant survivor with a Master's in Health and Human Service Administration, I find patienthood a lonely field. From the context of the editorial, I understand the kind of patient you denote with the term "expert" patient. Sadly, it is not the "emancipated" nor the "experienced" patient I describe. I think there are really only two kinds of patients. Those primarily focused on external authority as the source of cure and those who keep their own counsel, following an inner path to healing. Both access Western medicine and/or Eastern or alternative modalities. Whether the person is a cancer patient who has exhausted the protocols that exist in the doctor's realm of the known, or like me, a heart transplant patient with "transplant vasculopathy" which currently has no known cure except for a second transplant, we either lay down and die or become our own research projects. Practically speaking, there are two kinds of physicians -- those who confine themselves to what is quantifiably known (and covered under malpractice insurance) and those who recognize that what they don't know is far more important to most patients for whom nothing in the realm of the known offers any help. So this is where the road divides -- my physician stays behind while I explore on my own the realm of what he doesn't know, and often is not even willing to discuss. At the point that our dear physicians say, "There is nothing more that can be done" or "there is no known cure," many of the expert patients you define accept this passivity and make it their own. Some choose differently and put together individualized healing plans and take a solitary lead. With my latest diagnosis, I realized the cardiologists and transplant centers have nothing to offer me, except the long, slow drone of huge quantitative research that takes years and excludes me from the table. So I thought of an analogy: we have the concept of an "emancipated minor" in America, i.e., a 15 year old who takes on the responsibilities of an adult when he petitions the court to do so. He is a peer with adults. So, too, we need to identify new protocols and partnerships for "emancipated patients." I propose a Qualitative Medical Institute, one that would follow these patients' lead. One that would document these individualized healing journeys and outcomes; one with a new protocol so physicians who are interested in the living anecdotes can have conversations and share perspectives with these patients who have been abandoned by the current model; one that charts everything the patient does or takes, rather than the censored list of what most patients tell their doctors. The other designation I make is of the "experienced patient." These are the patients who have had multiple hits on your clinic or hosptial system because of serious or chonic illnesses they have managed; ones who have a breadth and depth of patient experience that may be combined with educational or work experience and used in an advisory capacity for policies, procedures, ethical decisions, patient advocacy, etc. Nurses, doctors and allied staff lack a "Patient Resume" on par with their professional resume, which results in poor procedures and processes as well as adverse outcomes. An experienced patient has a perspective that is critical to all aspects of patient care and delivery, yet we have no formal place in the structures that provide the care. Perhaps these thoughts are beyond the scope of your editorial and the "expert patient" program you are addressing. I appreciate being able to write them. Catherine Beckman, M.A.
Competing interests: None declared |
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