S4854.3

Part 3. A review of the talks and reflections

Edinburgh

Scott A Murray*, Dept General Practice, Univ of Edinburgh, Tel 0131 650 2675

Scott's pioneering PA work was first inspired by practical experiences from Africa. These made him understand that S Rifkin's model for Rapid Participatory Appraisal could be used for work in UK. Rifkin's information pyramid helps in collecting and analysing data (S4504); The participatory-friendly books by King's Fund on COPC (S4810) and Ong (S4819 + S4812) are much in concert and may help with this approach? Scott's own works concern: Patient's quality indicators of service S4808; Getting PLA included in medical education S4809(a great achievement!). Doctoral thesis on community profile by help of RPA S4804 & S4690-91-92 (in BMJ); Health needs assessment in general practice S4803; Mental health needs in locality S4801; Use of PA to acquaint new health workers with actual population (careering) S4802.

We also discussed if the BMJ editorial on truly involving patients S4794 ought be followed up by making readers aware of the synergy which such "individual" approaches could enjoy if one used PLA in group approaches for public health; Our common concern was the difficulty in getting some more physicians than the very, very few today to take a little time for exposing themselves to PA so that they could feel and judge about its benefit (but multi-factorial aetiology!). A sub-network among physicians could have helped a lot?

(Truls' idea on the patient info leaflet S4800 was later that one might use PA-co-operation with the patients to revise this at certain intervals?? (Also, I am interested in a copy of the relevant poster on meningococcal disease seen in Pollock Halls, will write Glasgow ) Scott worked with a couple of specific issues/diagnoses in which a PA-approach would be interesting to apply. If one planned to triangulated the aspects of the main issues by help of the two versions of PLA (RPA and PRA) a comparison between them were simultaneously done. But perhaps the planning of this trial will reveal that they are the same, only that they usually are applied on different problems?? (Parallel groups in different countries is another alternative.) A new, very rich report from a greater locality on community perceptions of Primary Health Care Services (S4811) also refer to the methodological review from Labyrinth (S4846) and summarises the few other UK projects which have used similar approaches. Please tell me where else could health service planners in any country so easily see peoples realities with regard to health and find so good indications to guide further change of co-operative efforts ?

Vikki Hilton, Inst. of ecology and resource management, Univ of Edinb., Tel 0131 650 6439

Rachel Hinton, Univ Edinb, Social Anthropology, Tel 0131 650 3936

Interesting discussion about how to evaluate participation and use PLA in research with children, cf. A Cornwall in PLA-notes. Stakeholder analysis? Regrettably, time did not allow me to watch a new relevant video on attitudes? How was it?

Board in corridor announced 3 UK meetings: ; 21/3 Dayschool in Local sustainable development. , 6-8/4 Hlth Prom.Res.Conf. K McPherson LSHTM, 30/5 Contrasts betw., needs patients and professionals. Other relevant things: Social integration & exclusion, Edinburgh;Health & Social Facilitators Learning Network, Vision21, Glouchestershire; Probably PLA-contrast? =Polemics: parallax.

Susan Guy & Andy Inglis, Scottish Participatory Initiatives. Tel 0131 5550950 (Hugh Govan, fishery, was not present)

They have been trainers in several workshops with Norwegian participants.

Refs: S4827, S4607, S4223g, and several reports arrived 24 Febr S4851(with schizophrenia patients), S4861-68.

The cost of hiring SPI (2 facilitators) for a local process for 4 days + 4days preparation + 3days report writing was around 1500£ (?). Slides were quiet and good reminders of details and principles for discussion. Many fine examples of "marginal" individuals and groups participating well in diverse countries. An early ladder of participation by SArnstein in J:Roy.TownPlanningInst. 1971;57:176-82. The demand for participation by ministries now causes much window-dressing to attract money to organisations! (Similarly: when purchasing services: Bids with community involvement stand strong in the competition as I was told in Bradford.) One should regularly apply some of the visual tools during PLA semi-structured interviews. The facilitator should get drawn visual expressions of the conclusions and preferably of the discussion before that. Time lines for the evaluation process should be included in the "Methods" section of an report.

Camilla Toulmin, IIED-Intern Inst Environm Development, Dryland Programme.Tel 0131 624 7040

Refs: U329, We had contact on PLA in Norway 1994. Further contact may be useful, when Camilla before long will visit Norad, she may be willing to discuss PLA in connection with the work of our Foundation and that of Noragric on institutionalisation. Thus, Bara Gueye in Dakar is planning a broad introduction of PLA (MARP) in one community in each of 4 African countries. As something similar we hope for in Norway we will try to establish a link. We guess Save the Children Fund may become the most important actor in Norway, starting with the youth in 5 Mid-country localities. Then our Foundation may be invited to plan the use in other sectors of a couple of these or others communities (e.g. in Sigdal)? The integration of MARP in the research of the Dryland programme seemed very good, but time did not allow to examine how far into the administration this went.

Bradford

Refs: U391, S4765 - 66, S4837 - 40a, S4843-46, S4829, (an impressing array of reports from a very small firm)

This consultancy seem to have integrated very well 1)practical experience, 2)attitudes & behaviour with sharing, and 3) their personal choices among the management theories. Their resulting processes seems very much like PLA, but without access to the full range of PLA tools. I guess that in spite of more visible structures, their processes may be a little more dependent on the personal ability of the facilitators? With regard to management theories they are heavily influenced by OD (the specific Organisational Development), just the theory with which A Ebeltoft inspired his institute (and myself) many years ago. There, further work has led to the book: S4645 Pålshaugen Ø, Gustavsen B, Østerberg D, Kemp P. The end of organization theory? DOWI-5. Amsterdam, J Benjamins Publ Co. 1996. This influenced probably the interpretation of the experiences of another group working with participation in municipalities in a short, fine manual for facilitating communication with inhabitants of municipalities, but again without knowing about the PLA tools: S4786 Elster E, Hovind AB. Opptur. (Kom igang med innbygger- og brukermedvirkning) Kommuneforlaget 1997. The Labyrinth consultants maintain good relations to the Institute of applied social studies at the Univ. Bradford as well as to other statuary and voluntary organisations in the area (see below), thus being able to observe long-time effects in their neighbourhood besides their nation-wide consultancies.

Georgina recommended as very practical the book of WHO-consultant M-T Feuerstein: Partners in evaluation MacMillan Publ. (S4869). Among the 4 new main national public health strategies, one was Community development. Similar principles can be utilised in organisational, community and personal development, the common objective is to manage change. One should keep contact with all groups of stakeholders and find key persons within each group.

Ann-Marie Coubrough, Hutson Street Health Project, Tel 01274 390 097

Refs: S4841a-d; Labyrinth was a consultant to this project, which was a kind of NGO (voluntarily based).

There were a lot of activities going on, I was especially interested in the interface with the GP group practices. During the years a thrust between the project and the GPs had grown, so that today say a half of the GPs in the area were serious interested in "community development" for the sake of peoples health not only for the sake of health services. Perhaps in part because the project relieved the doctors for "simple" but quality of life promoting tasks, they were stabile, staying for years in their groups. One adhered to the "one-stop" principle as well as one could. Transport and distances do affect the lives of people astonishing much (confer that establishing a bus line was the main effect of the assessment of Scott Murray in Edinburgh!) Could a couple of their dedicated personnel (and a couple of the doctors) have managed still better if they had had the PLA toolbox supplied by attending a 5-day PA workshop!?

Refs: S4842a-c; Labyrinth was a consultant to this project.

The project was part of municipality health initiatives. As such one have to give special attention to active grassroots participation, else it may drift away from peoples perceived needs. It now ran an array of activities for a neighbourhood (of about 20 000 ?). This was nicely demonstrated on a fine new video. In contrasts to the Hutson street GPs, those in this area seemed not interested in community development. It is difficult to tell the causes for this, but I notice that many people were very critical towards the doctors and their concern for costs when "speaking out" in the needs research of 1996 (S4842b). "They've written the prescription before they've asked what the illness is". Maybe with one doctor in the research team, it could have helped them out of their "isolation" and into a broader, new public health, work. Provision of "drop-in" and "one-stop" services were popular. Evaluations of the project were definitively positive. However, it would have been very interesting to see if introduction of PLA could add something both in the daily work and in the already good evaluation process? And to still more co-operation and action on concrete issues? In total, I got the very rough estimates for GP's serious interest for community development to range from 0% (W.B.), 20% (Edinburgh), 50% (Hutson street). It isn't impossible!

Hull

Linda Tock, co-ordinator, Community Focus, Education Centre, Tel 01482 883783

Refs: S4835, (S4834), S4780, S4779

Community Focus won a grant of 85 000 £ from the National Lottery (because their participatory approach?). The state regeneration (of estates/housing) programme is coming in with funding too. Linda is trainer at local PA workshops and co-ordinator of the Hull network of about 90 PA-facilitators. A monthly News-letter is issued with for example. requests and offers for co-facilitators in new project/processes (U398, S4826). In fact several jobs for the facilitators has been created because their PLA-competence is now highly valued in this area. The net-work is supported by Oxfam with 1/2 days salary a week. Linda has a wealth of experience from the two years of energetic, intense PLA activity in the Hull area. So much interesting to tell. Good initiatives are almost always helped, the pay are adjusted freely according to what the client is able to manage (say from 0 to 300£). One of the interesting issue for research is what different people define as "violence". Street interviews and group sessions during lunch time in schools are often used placements. Robert Loes (?) from Inst. of development management, Univ. of Birmingham, often find placements for students in the Hull network. Teenagers are trained to work as peer educators on drugs. Linda supplied me with many reports.

Shona Murdoch, Drugs Challenge Project, Tel ?

Refs: S4833; A most interesting talk with important verifications of my earlier perceptions of PLA (triangulation). Especially the variation in acknowledging the PLA-process for active participation among localities. People in one small town was very resistant to speaking out. This in part may have been due to a high unemployment rate for years and perhaps also to dull and uninspiring work when they had work in earlier times, a pessimistic subculture reinforcing itself? We know from other sources that the readiness for co-operative actions (like PLA) has several times been shown to be correlated with the amount of social capital = the level of social integration, see J Pretty S4849a (and T Sørensen in Norway S4350). When we plan alternative projects we must regard that those with little social capital of course are those who most need to have it increased. With regard to treating and rehabilitating addicts, Shona did not know about if anybody used PLA as a help.

Sheila Gaukroger, Inst. f Learning, Life Education Centre, Tel 01482 465393

Teacher working on her Master thesis on PLA with children (see Rifkin). A mobile caravan contain pictures and anatomic models for the 4 -11yrs old audiences to ask about. The class teacher observes. Drug education was the reason why this project started. However, in full accordance with the PLA principle, the facilitators don't hide anything but never mention drugs unless some child ask! Parents are often invited too. Similar to Scott's idea about using PLA for new careers making themselves acquainted with their population group, Sheila mentioned new teachers could more rapidly be acquainted with a new class by PLA. PLA work with small children can throw interesting light on some of the principles behind the PLA methodology, e.g. the relative value of individual versus group interviews regarding the bias towards the adult facilitator and/or their peers.

Martin Westerby Quality of life project, Dept Public Health Medicine, Univ of Hull, Tel 01482 466056

Refs: S4836, S4832, S4782, S4780, S4776, S4774.

His department has no teaching, only research obligations. In spite of the physicians there worked on backache and similar issues, their interest for trying PLA themselves did not show up. This was so in spite of the former and present heads of department being very positive to the approach. (Truls: probably they have not seriously discussed and seen demonstrated how PLA can support relevant research - e.g. what patients and lay people can contribute in more specific medical contexts. The explosion of PLA in the area has been concentrated around applications within a "narrow" field (key-word: drugs) because large , basic needs for action can be assessed this way.)

Roslyn Abbott , Community Development Worker, Hull DoC, tel 01482 854550

She used visualisations - which I have kept as a good reminder - to describe the situation and challenges in Thornton Estate. It was useful to hear about details in an ongoing project.

Susle Hay, (administrative & info co-ordination), Hull Developing Our Communities, tel 01482 854550

Her UNICEF background led to her statement: PLA is not known to be directly used but urgently should be tried in many Human Rights contexts. Then the balance between the different Rights can be better observed. Susle seemed very gifted and helpful for Hull DoC in accounting, reporting, publishing etc. They have started to think about a congress in Hull summer 1999 for showing and discussing their varied work. with PLA with people from Britain and abroad.

Refs: S4831,

Tish Lamb, Aids Action, Hull

Refs: U396.5 .The area had suffered from the decline in fishery and the gas industry had not given so many employment. Aids Action Hull is a NGO which try systematic to use PLA in the whole organisation and its work with its clients. There are about 40 AIDS cases in the area (prevalence 11.4/100 000 ? vs. 2.6/100 000 in Norway). Difficult to tell how many HIV-positives. (Truls guess perhaps 120-150 HIV-positives?????) Their task was prevention and care not surveillance. The younger physicians had a more active attitude with regard to HIV/Aids than the older ones. A shift now. Difficult cases were earlier often sent to Manchester. Then state cut in funding for Aids/HIV support services in London (increase for new treatment) and a little more service locally made some Aids emigrants heading back home to Hull again. Aids Action helped clients with psychological and physical support as e.g. complementary therapy. Because the strict regimens/regularity demanded by the new treatment drugs, several afflicted did not want to start such treatment. There had been strong homophobia, but now the catholic church has clubs for gays. About half(?) of the bishops in Church of England gave full backing to homo vicars. All the 4 staff and 7 volunteers were trained PLA facilitators. They had about 10 peer groups which sometimes invited an authority person. The folders from Aids Action (?), included one on "rapp" (rights and participation project) for children and young people who are in difficult need. Save the Children was one of the three partners behind.

Oxford

John Wood, adm., Poverty in UK programme, OXFAM, Tel: 01865 311 311 (director is Audrey Brasbein)

Refs: U396.6. Oxfam plans a national conference on What the North can learn from the South. People from the South can with PLA contribute well to the analysis of local needs in the North, examples found in Gloucester (and Hull!)

David Sackett NHS R&D Centre for Evidence-Based Medicine, Univ Oxford, Tel 01865-221320.

Refs: S4818 EBM, S4817 Clin Epidm, S4816 BMJ, cf. S9962 and S4794 BMJ. The Cochrane collaboration also has a group for listening to the patients and might be interested of what PLA may yield. Basically EBM and PLA both rest heavily on direct experience though many - who do not regard this aspect - talk about them as very different extremes. Rightly, the exact problem at hand should decide what methodology should be stressed. (Thus there are connections with "PBL - problem based learning" S4753 and "problem based methodology" .S4773)

Michael J Goldacre, Unit Health Care Epidemiology, Dept Publ Health & Primary Care, Tel 01865 226 995

Ethics is important aspect at involving patients (S4823). Representatives for patients are included with the many professionals in the working groups which carefully develop the outcome indicators. With these the NHS performance for each diagnosis may be followed locally. One example is the report to the Department of Health on stroke (S4847). The respect for what patients can contribute with grows as one see what issues they bring into the discussions. The health authorities in Oxfordshire use patient panels with support of King's Fund (R Patrick, Wilkinson??).

Stein Ringen, Dept Political Sci. (?), Univ of Oxford ; Tel 01865 278715

Refs: S4714 Reformdemokratiet.; He was the next day appointed a member of the Norw. "commission on values";

London

Cate Turton, ODI - Overseas Development Institute, Tel:

We can certainly make many good analogies from their evaluations in a specific area as (PLA in) watershed projects in India to quite other programmes (see newsletter: Natural Resources Perspectives -- U396.3). The experiences Cate had from India showed serious difficulties if one assumed homogeneity (of interests) in a village as a basis for PLA/PRA work. The different casts were especially difficult and NGOs' participatory work in several localities had often taken 8 years to establish a satisfactory move in the co-operation, that was certainly not an approach with satisfactory cost-benefit! (Truls: 8 years mean that they must have started before a more structured PLA process was defined and thus could more systematically be regarded Some "details" may mean a great difference in practice.) One reason we discussed as a major difficulty was that the many NGOs had instructed their workers to act and report on very specific aims and sectors. But any process which not regard the most important principle of PLA, that the end-users themselves point out what they need most, can not be regarded as a proper PLA process. [The accusation from several sources that PLA too often over-simplifies be assuming homogeneity of local interests and consequently yield mediocre results should be more thoroughly studied. A tentative list of reasons why people think like this may include: 1) We all tend to judge own practice according to our good intentions but judge the practice of others according to how we have heard they perform in real life. 2) Other good facilitators would not have categorised the actual process as PLA/PRA process (the heading used of because of fashion or misunderstanding); 3) The actual facilitator has not regarded the initial level of social integration in the actual target group in the choice of first contacts or generally in the planning of the process. Or the outsider "judge" has not understood that a low initial social capital will most often delay progress. ] Similar to others in UK and Norway, Cate reported successful use of PLA-elements in more private contexts.

Laura Greenwood, IIED, International Institute for Environment and Development, Tel 0171-3882117*

Susan Rifkin, Dept Public Health and Policy, LSHTM, Tel:+44 171927 2074

Library, LSHTM - London School of Hygiene and Tropical Medicine

It was -as always - easy to find papers where full PLA might have done a still better job than the described good attempts in the same direction (S4820-22).

Peter G Smith, LSHTM,

Peter's bit of advice on my & al.'s paper on The severity of meningococcal disease was important for us (S9575). Later, Smith and Morrow's toolbox on Methods for field trials of interventions against tropical diseases (S9962) from 1991 was a great support for the exact trial issue in our model for Local Health Trials. [Regrettably, then we had only one small local trial (on the bedside use of CRP to avoid unnecessary antibiotics). To us it revealed some unexpected field factors to be regarded in health trials in the North.] In addition the book very nicely pointed out the importance of community involvement [To fulfil their principles in practice the PLA tools probably can serve better than all or most other approaches, I am sure!]. Participation was in fact the other main issue of our model (S9950, S4112) but how was not solved before we discovered PLA. Thus, the very important results of the field trial by Grosskurt and Peter Smith's co-workers (S4414) on treatment of STDs for preventing spread of HIV, was surrounded by an information campaign which did not have an apparent effect. [My question is: what would the effect of the same info-resources have been if they had been applied the alternative - an appropriate designed PLA approach??] The "toolbox" (S9962) also contain description of a "stepped-wedge" design (S9727). [Its main principles of controlled, successive implementation may and ought be applied in many more implementations of new interventions and programmes!]

David J Bradley, LSHTM, (helpful secr. Helene Priestley)

David once evaluated the national capacity building programme of UNICEF in Africa. That report showed that the principles of Local Health Trials can be feasible also in the field (U268a). (His resistance to my sketch of Local Health Trials model indicated that drawing on the ground not so easily may imply what is the prime element, on a board most people will think the uppermost element as the superior one?!) He now told me that the funding agency withdrew from that project in spite of the good evaluation it got. This is a general problem we often meet in PLA work, but we hopefully are becoming more clever by exchanging experiences on early action (see e.g. S4805, S4806). He now was trying to get the dispersed good researchers in Uganda to co-operate. The very scanty resources now contributed to keep them working on their own but also was an important cause for the struggle to make them see the benefit of co-operation with each other (having plenty of practical experience to share) and extern experts (having more skills to share). Though he knew positive things about PLA/PRA through direct contact with I Thomson and R Chambers, he was a bit sceptical too. The election of the new secretary general in WHO was received with acclamation in LSHTM. [Sigrun Møgedal - a long term mental supporter of our Foundation - commented frankly in the Norw. press on the present challenge of WHO the day after I returned (S4825). With LSHTM ((PVaughan, GWalt,KLee) she has evaluated some aspects of WHO (S4457). Through her Centre for Partnership in Development's PLA-contact for IDS we were introduced to R Chambers and PLA.] (Dr Withworth -AIDS Uganda)

Colchester

Jules Pretty, University of Essex, Tel: 01206-873323 (secr. Marie Chan)