One method that relates to my particular area of expertise is the inclusion of patients on the governing boards of community health centers. In fact, these boards must be at least 51% patients. This is a way of giving the community control or "ownership" of the center, and it is typically considered as a means of giving a voice to marginalized populations, allowing them to have a say in the types of services the center provides so that they will be tailored to the needs of the patients in the community. It is also a way to obtain information on the quality of services a center provides. I have done extensive work in this area, and have found that this particular mechanism of patient participation (there are many others), has both pros and cons. Happy to tell you more if you find this of interest.

Patient and public engagement appears to be critical to adoption of any change in health care policies. Research on development of clinical practice guidelines seems to uniformly support inclusion of patients and consumers in the Guideline development process. The challenge is that health care is so complex (even in Canada) with various payers and levels of coverage - depending on the mechanism of injury - that patients and consumers must be afforded the opportunity to learn sufficient background information about the system, condition or problem in order to participate in a meaningful way.

Hi Brad Wright and thanks for your answer.

really Im interested in models of patient and public participation and implementing them in hospitals and clinics.I will be very gratful to have more about these models.

also the concept of PPI is a new concept in Iran, I am going to study the models and benchmark a model for our situation.

I think participation in public sector will be different from private?Is that?

Hi Viivi Riis and thanks for your answer.I have read some articles about patient participation in developments of clinical guidlines but these dont introduce a clear way to how involved people in steps of clinical guidlines developments.

This is a summary that applies to the UK system, but may be helpful to you. It comes from the Roayl College of GPs in the UK.

http://www.rcgp.org.uk/revalidation-and-cpd/~/media/1DEEDB9447064393BA5F44D8255EB988.ashx

Than you Dr Brian fisher, it was a very useful document.

I need your help to complete my study.thanks again.

If you have good data capture systems that can measure patient persistence with medications and compare these to patient use of medical resources such as number of hospital visits this will provide invaluable data with which to inform the patient/governing board meetings alluded to in the initial messages. A good evidence base is always a good springboard.

The public health care sistem in Brazil, called Sistema Único de Saúde, had introduced, in the 1980's, the concept and the pratice of social control. In this policy citizens have the control of the health care system budget.

Mr Luis Cesar Souto de Moura,can I have detailed information about that?It sounds very interesting,because public participation in system budget control is a strange concept in public participation!

The public health care in Brasil, called Sistema Único de Saúde in portuguese, has a nacional budget. The county part of this national budget is transfered to a county healt care found from The National Healt Care Found. This county budget suports health care programs and services according to a county plan that must be approved by de County Healt Care Council. This council is formed by citizens, institutions and professionals. Without agreement of the County Health Care Council the budget can not be used. The use of the budget without agreement of the County Council is ilegal and the Mayor can be sued.

hi, Mohammad and everybody. Here in Colombia the participation of public (patients and consumers) is included in different Laws in our social security system

Another documents that can be useful

The last one is one ppt that was made for me long time ago but can help you.... sorry all documents are in Spanish

Hi Mohammad. Very interesting question and great discussion. In Germany regulatory bodies are discussing the inclusion of preference studies in healthcare decision making. The discussion started with the introduction of the efficiency frontier to make pricing decisions for pharmaceuticals. The problem was, that multiple clinical endpoints (decision criteria) might be used to make these decisions. Multiple decision criteria might lead to contradicting decision. Therefore the question arose how to identify patient relevant endpoints, how to weight the identified endpoints and how to aggregate multiple decision criteria into a single metric (describing patients benefit). Two pilot studies have been conducted. One study used AHP and the other study used Discrete-choice analysis in order to support this approach by eliciting patient preferences. If it comes to public or patient participation in healthcare decision making, the Discrete-choice experiment seems to be an appropriate quantitative method to analyze public or patients preferences.

I didn't understand your point of view Kevin. We are talking about pacient participation in the decision process of health care budget. Your ansewr didn't adress to this issue. Am I wrong?

The patient and citizen involvment website at Health Technology Assessment international

http://www.htai.org/index.php?id=545

has a number of resources devoted to involving patients and citizens in health decision-making.

I personally like deliberative inclusive methods such as citizen juries, planning cells or the NICE citizen council.

These can provide the views of "informed" citizens or patients but you would not want to use them for all decisions. DCEs, focus groups or interviews are useful to collect patient preferences about their care.

The Canadians seem to do this well. Gauvin and Abelson published a primer which can be found at:

http://www.cprn.org/doc.cfm?doc=1519&l=en

Here there is another example. The Chilean health reform of 2005, that consisted of the introduction of a prioritized list of fifty-six health conditions, included people´s preferences, as one of the criteria used to select the conditions. The reformers carried out "focus groups" and surveys to elicit the health conditions that the population deemed as the most important.

Here is my paper on the health reform, in page 787 you can find a paragraph describing the process.

http://www.fen.uahurtado.cl/pdf/publicaciones/Health_Prioritization_The_Case.pdf

I'd look to the literature for Community Based Participatory Research (CBPR)? Hope this helps...

I would look at the chronic care model and how the patient participation, patieint involvement end of the model can be implemented.

http://www.improvingchroniccare.org/index.php?p=The_Chronic_Care_Model&s=2

Yes, done and done. There are no easy answers when looking to the issues of Native Americans. We have consistently ("we" being the dominant society) told them how, what, when and why to plan their healthcare programs and they consistently fall apart when funding abates. My guess is that there is not enough CBPR on the terms of those specific communities (always on the terms of the funder) and a lack of consideration of how traditional healing practices/methods are used and valued. If all we consider is "our" evidence-base, we totally miss out on "theirs". Thank you so much for your response -- this is such a valuable discussion board!

hello everybody

I hope that this discussion will help us to recognize the varius methods to involve patient and public in health care.

thanks for all participation

This so fits, although obliquely, with my research topics. Is anyone on this discussion working with indigenous folks? It's been my experience that focus groups are close to, I'm sorry to say this out loud because my passion is public health and it's such a mainstay but -- useless. We certainly use it as one of the very few ways to get concrete input from those most affected, but few people show, despite incentives like gas cards or grocery cards, and many folks are reticent to speak about issues in front of other community members. It's a conundrum because individual interviews take so much time and in "Indian Country" in the US, it takes a considerable amount of time to build a trust relationship. In the US, we decided a long time ago that these original Americans should just adapt to our new healthcare models and it just simply hasn't worked -- for them OR funders. Thanks so much for the thoughtful responses to all of my questions as well! em

Hi friends,

If I am not mistaken, this depends on which kind of health care is provided to the patient or which one is discussed. in a hospital setting, in a health center, in a campaign program, by developing a policy, for advocacy purpose and so on, but I believe there is no only one way of answering this question.

I see there is participation in treatment, planning systems and evaluation, but this still depends on which program or what type of health care. for example if we develop a hospital for chronic diseases and ask this question to our selves, than we are focusing on how chronic diseases are dealt with, the type of treatment that more effective and costly efficient and so many other questions. for example if we implement immunization campaign for preventing Influenza we might ask our selves about the coverage, about the access of the public to this campaign, utilization of the public to this campaign and so on. There for Involving patient and public in health care depends on the type of health care. Finally I believe this question is whole question that could not have only one specific answer.