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Thanks but Patient counselling is something different than patient advocacy..

These are not so much stages of patient advocacy, as different forms of patient involvement. Traditionally patient advocates and patient organizations were mainly considered as interest groups or 'stakeholders' with a political voice partaking in negotiations and policy-making. They would defend patients' interests, much like unions (are supposed to) defend workers' interests, MPs defend the public's interests, and medical professional organizations defend their interests, etc. Increasingly, it is recognized that patients are experts in their own right, and have unique 'experiential knowledge' of their own lives and bodies that is different from medical and scientific knowledge, but is essential for patients to 'live well' with a medical condition and its treatment, especially in the domain of chronic diseases which can not be solved with any quick technical fix but have to be lived with and managed within all aspects of life over many years (Prior, 2003). The knowledge of ‘expert patients' contributes to better treatment of their own illness, but not so much to research. The concept of ‘lay-experts’ as coined by Steven Epstein (1995), describes patient activists who contribute to medical knowledge production, based on their illness experiences AND detailed knowledge traditionally limited to medical experts (i.e. they know the medical vocabulary, scientific methods, and 'technical' ins and outs of medical treatment and research).

This is a very quick 'history' of patient involvement (and the research on this topic that has developed these terms), and others probably exist. If you read French, I found this review helpful: Eve Bureau et Judith Hermann-Mesfen (2014) Les patients contemporains face à la démocratie sanitaire, Anthropologie & Santé

Prior, L. 2003. Belief, knowledge and expertise: the emergence of the lay expert in medical sociology. Sociology of Health & Illness, 25, 41-57.

EpsteinS. (1995) The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials, Science, Technology and Human Values, 20, 4, 408–37.

Rabeharisoa, V. (2003). “The struggle against neuromuscular diseases in France and the emergence of the ‘partnership model’ of patient organization,” Social Science & Medicine, 2127-36

Dear  Loes,

Thank you very much for your thorough answer.

I speak French and I know the work of V. Rabeharisoa for some five years now as well as that of S Epstein.

 I have heard recently talking about "patient advocate experts" and asked what is the difference between this and the "expert patient advocates" but the answer was vague and could not make the difference between the two.

While the expert patient advocate by Epstein reflects what patient advocates do today,  a patient advocate expert does not sound proper to me. First I would say it's rather "patient advocacy expert" and not "patient advocate expert", but what does someone understand by it? I would say that it directs to someone who is expert on the practicalities, the management of patient advocacy and who uses this knowledge and skills either for his own advocacy or for others (a patient group or organization). Moreover, it leads to think about a professional who offers services for a fee.

Wondering what you and other researchers active in this field think about this term. Can it be used to differentiate between a patient who is enabled, engaged, empowered,  equipped, (these adjectives refer to definition of the e-patient by Dr Tom Ferguson) and uses the experiential knowledge acquired while caring for his health to advocate for better care for patients, either individually or as a member of a patient organisation, and a  "patient advocate expert' ?

A "patient advocate expert" is presumably a patient, who after becoming expert in his disease and in participation in a patient organization or in individual activism,  is rather a full-time patient advocate, volunteer or professional consultant, who  not only advocates for better care but also consults interested bodies on health care delivery issues, is invited to be member of various health care policy committees, consults on how to deal with patient advocacy groups, is and considers himself a "health professional" in his own right.

Would be interested to hear your views.

for e-patient definition: http://e-patients.net/e-Patient_White_Paper_with_Afterword.pdf

Hm, I have not heard those precise terms used before. It might also refer to a distinction between those who are patients with expertise in advocacy (expert patient advocate, who is an expert patient & an advocate), which would include both you describe above. While a patient advocacy expert could be someone who knows alot about patient advocacy (a researcher, or a professional working for a patient org) but who is not a patient him/herself? (an expert in patient advocacy). I guess I would consider myself the latter, as my research make me an expert in patient advocacy (I know the liteature, I study the process), but I am not actually a patient advocate myself (I have no affiation with a patient organization or anything). Maybe?

Thank you Loes, your answer describes more or less what I am alI so thinking, including that as a patient advocate expert this also leads to think that it is a professional who works for a fee.

I also consider too far reached to consider "patient advocates experts" as "health professionals", since that implies they have completed the necessary education and obtained professional licenses and that they remunerated.

I see a refusal into accepting the reality of being a patient that is some one who has experience of a specific disease and has learnt how to cope with and self manage his symptoms/health condition and/or advocates for better and trying to raise above the patient advocate status to that of a quasi "health professional" .

There are many more related questions that arise, and I think that researchers in patient movements will have new topics for research.

Dear Kathi and Loes

I do not know if you are still on this question but the 'professionalisation' of advocacy, particularly the Independent Mental Capacity Advocates and the Independent Mental Health Advocates in England and Wales, UK, means they have been paid statutorily since 2007/9 (as in the US and some European countries- not sure about Canada?). In my work I see that this development in advocacy is most creatively related to people power/patient involvement and the debate as to whether volunteer or paid advocates are equally part of the 'nothing about us without us' social movement of advocacy. Expert patients, self-advocates and unpaid peer advocates are most valuable in the health economy but maybe they cannot be a substitute for a safety net for the vulnerable, which remunerated independent advocates represent (sub social workers), or is this just a luxurious anomaly created by the English/Welsh NHS welfare state?

Here are some of my lines from my London-based thesis on the subject... and articles which might help. (And, by the way, I think that the line is to pay volunteers/expert patients, not a wage, but a fee, for their involvement. It is now standard in the UK, and there are budgets for this in research institutions from what I see.)

'Emerging from the consumer and civil rights movements in the USA of the 1970s, the existence of ‘patients’ rights advocates’ led to the question as to whether it was indeed a role, which should be performed by nurses. (Bateman, 2000; Llewellyn & Northway, 2007; Ravich & Schmolka, 1996.) Could or should social workers and other practitioners possibly ‘advocate’ for their clients? (Mallik, 1998).

Mallik, M. (1998). Advocacy in nursing: perceptions and attitudes of the nursing elite in the United Kingdom. Journal of Advanced Nursing, 28(5), 1001-1011.

Mallik, M., & Rafferty, A. M. (2000). Diffusion of the Concept of Patient Advocacy. Journal of Nursing Scholarship, 32(4), 399-404.

Best wishes with your project and I would be interested in any update.

Geoff