The PRIME project: developing a patient evidence-base

[Dolphin]

Health Expect. 2010 Sep;13(3):312-22. doi: 10.1111/j.1369-7625.2010.00590.x. Epub 2010 Jun 23.

The PRIME project: developing a patient evidence-base.

Staniszewska S1, Crowe S, Badenoch D, Edwards C, Savage J, Norman W.

Author information

Abstract*

BACKGROUND:

The concept of evidence has become firmly rooted in health care, with most importance placed on the outcome of research in clinical and economic spheres.

Much less emphasis is placed on the patient's contribution to evidence which remains relatively vague, of low status and often difficult to integrate with other forms of knowledge.

AIM:

This article proposes a concept of patient-based evidence, to complement clinical and economic forms of evidence, and demonstrates one way in which it has been operationalized.

The PRIME project developed a patient evidence-base to capture the lived experience of individuals with myalgic encephalitis (ME) or chronic fatigue syndrome (CFS).

DESIGN:

Interviews were performed with 40 individuals with ME/CFS who varied in a range of demographic characteristics, including age, gender, and how severely affected individuals were.

RESULTS:

PRIME has developed a patient evidence-base which has an extensive array of experiences data to provide researchers, clinicians and others with an in-depth insight into the lived experience of ME/CFS that can be used and analysed.

Data are grouped into a wide range of themes, which can be downloaded and used in a variety of ways as a source of evidence to enable understanding of the lived experience of ME/CFS and so contribute to the development of a more patient-focused research agenda in ME/CFS.

CONCLUSIONS:

While patient-based evidence used in the PRIME Project provides a useful start, further work is required to develop this area conceptually and methodologically, particularly in relation to how patient-based evidence can be considered alongside clinical and economic evidence.

PMID: 20579119 [PubMed - indexed for MEDLINE

I gave each sentence its own paragraph

 

[Dolphin]

This paper had very little data from patients. This was about the only thing*:

Table 1 An illustrative selection of themes and quotations

Theme
Illustrative quote

Causes and factors
In the year leading up to the ME I had a lot of stressful experiences to deal with, which may or maybe
not have influenced me getting the illness, I dont know, but Id say I had a moderately
stressful life (039)

Symptoms
Well a really you know, a really good day is when I havent got any brain fog at all and I dont get any
sort of underlying tiredness but I mean they are very rare, you know one or two a year when that
happens so to me when I say Im having a good day is when I dont feel too tired, me muscles arent
aching too much and I can perhaps go for a little walk or do a bit of shopping (003)

Coping strategies
The coping side of things, like everyone, (interviewers name) Ive tried every thing under the sun,
acupuncture, homoeopathy, chiropractor, meditation, yoga, anti-Candida diet, massage, supplements,
spiritual healing, laying of hands at Church, Chinese medicine, reflexology, the latest one is
Omega (004)

The rest was just explaining what was done and saying why it was useful. So for most people, I imagine it wouldn't be a good use of your time to read it.

The data (extracts from interviews) itself is at: http://www.prime-cfs.org.

*There is also the following, which I don't have

Supporting information

Additional Supporting Information may be found in the online version of this article: Table S1. Interview themes and quotations (long version). These quotations are illustrative. It is possible to expand each quote on the database to view further details and the context. With each extract there is information on the unique identifier, age, gender and severity.

 

[barbc56]

I agree. It looks like this study(?) is certainly limited but they do say that further research is needed. I need to read all of the above as I just scanned it.

Lots of kudos for breaking up the paragraphs. It makes reading much easier!

Barb

 

[Dolphin]

I agree. It looks like this study(?) is certainly limited but they do say that further research is needed. I need to read all of the above as I just scanned it.

Lots of kudos for breaking up the paragraphs. It makes reading much easier!

Barb

Thanks.

Just to be clear: I'm not saying the study itself is not of much value, just that the paper just talks about the process and gives virtually no info on what the patients actually said. That can be got from the site itself: http://www.prime-cfs.org/.