Here you’ll find some ideas on how to operationalize the question proposed by Lucy and Kat working with the test-user.
For each question, you’ll find below
a) one or more rephrased versions of the question that we can actually answer – the “actual questions” (as Michele calls them)
b) a short description of the data that can be used to answer each actual question
c) what we need to to do collect the data for the map and who should/could do it
d) some explanation of the above
As you’ll probably noticed, I haven’t made explicit which maps will be designed based on the data that I propose to collect. The reason is that this is something that London and Milan have to decide by discussing with the test-user.
What I need you to do ASAP:
- London: validate with the test-user that the proposed operationalization makes sense and tell me if you can provide the resources described below and when.
- Amsterdam: tell me if you can collect the data as described below and how long could these take.
- Milan: start thinking about the visualizations that you could draw with the data described below and tell Paris and Milan if you need the data to be collected in any ‘special’ way/format
1. What is living well as older person / with dementia?
1.A.i) Actual question: which are the resources (human/material/institutional…) that help people living well with dementia?
1.B.i) Data: hyperlink network of the websites cited by blogs of people suffering from dementia or caring for them
1.C.i) What we need: if London or the test-user knows some of these blogs please give Paris the urls (but we can easily found them ourselves). A part from that, Paris can do collect the data in three weeks from now.
1.D.i) Explanation: What I understand, drawing on Kat’s ethnographic work, is that dementia is much more than a medical disease – it is a whole way of life. Learning to live with dementia requires transforming many crucial relationships (with one’s house, with public institutions, with the city, with friends and family and so on). The map I would like to propose to provide some answer to this question is a classic hyperlink map. As I recently discovered, there are several blogs written by people suffering from dementia or caring for them. I think, it would be interesting to find out which websites are most cited by these blogs. Do they cite among themselves and recognize as a community? Do they cite institutional websites and if so which pages exacly? Do they cite commercial services, ngos, local communities…?
1.A.ii) Actual question: what are the aspects that are most discussed about dementia?
1.B.ii) Data: Heatmap of the modifications/reverts on the wikipedia pages: http://en.wikipedia.org/wiki/Dementia – http://en.wikipedia.org/wiki/Aging – http://en.wikipedia.org/wiki/Alzheimer%27s_disease
1.C.ii) What we need: Amsterdam should be able to collect the data.
1.D.ii) Explanation: This is a difficult question for controversy mapping, because living with dementia involves many difficulties, but little explicit controversy. However, I think that it remains interesting to identify which issues connected to aging/dementia/alzheimer are most discussed about and I believe that Wikipedia is a good place to search for this information. The data we will find may be interesting or not, but it is impossible to know without trying. Therefore, I propose that we try.
2. What are the public health and social care messages about ageing and dementia?
2.A.i) Actual question: Which linguistic expressions are most frequently used by edifferent public health and social care institutions when talking about ageing and dementia?
2.B.i) Data: Occurrence of the most frequent expressions in a corpus of messages about ageing and dementia issued by public health and social care institutions.
2.C.i) What we need: London should provide Paris and Amsterdam a set of documents about ageing and dementia issued by public health and social care institution. This set does not need to be huge: 15-30 well chosen documents would be perfect. For each of the documents we need to know: who published it (which institution) and what is its the subject (ageing or dementia). After receiving this corpus, Paris can extract the data in about one week.
2.D.i) Explanation: Since the original question was about the ‘messages’ delivered on ageing and dementia, I believe that a classic text analysis exercise can provide interesting results. The results however will be more interesting the more the corpus is representative. Ideally, what we need is the one or two documents in which the position of a given institution is expressed in its most representative way. And we need to have all the relevant institutions. The documents should be equivalent in size and preferably not too long (rather than a 200 pages report on dementia where anything can e found, it is much better to have the 10 summary pages where the most important messages are delivered).
2.A.ii) Actual question: Which linguistic expressions co-occur most often with the words ‘ageing’ and ‘dementia’ in public health and social care messages?
2.B.ii) Data: Co-occurence of linguistic expressions in a corpus of messages about ageing and dementia issued by public health and social care institutions.
2.C.ii) What we need: same as 2.B.i but this time it is Amsterdam that should do the data extraction.
2.D.ii) Explanation: This data resembles a lot the data described just above, but with a crucial difference. Instead of focusing on which institutions use which expression, we focus on which expression appears next to the word ‘ageing’ and ‘dementia’ in the whole corpus. It is difficult to say know if both of the approaches will be interesting, but once again there is no other way than trying and see what comes out.
3. Are older people assets or deficits (ie a drain on society)? (A cross cultural comparison)
3.A.i) Actual question: In different European web-spheres, what are people talking about when they talk about older people?
3.B.i) Data: Issues associated with aging in different European countries.
3.C.i) What we need: Starting from the the map of aging-related issues for the first London test (https://docs.google.com/open?id=0B4a4mDb99e7Hc18wRjNKWFRzZEE), Amsterdam should decide for each issue is it is ‘positive’ (older people seen as assets), ‘negative’ (older people seen as deficits) or ‘neutral’. Also, it would be nice is Amsterdam could identify issues that are present in more than one country (or that are very similar in different countries).
3.D.i) Explanation: Since it is difficult to decide which expressions translate a given concept in different language, cross-cultural comparisons cannot be performed through an automatic text analysis. More than linguistic expressions. I think that we need to concentrate here on the ‘issues’ that are discussed in different countries. I can’t see a good reason we shouldn’t start from the work that Amsterdam did for the first London test on the map of aging-related issues. This was already a good dataset and it only need to be enriched as described above.
3.A.iI) Actual question: In different European web-spheres, which images are used to picture older people?
3.B.iI) Data: Images associated with aging in different European countries.
3.C.iI) What we need: If Amsterdam can mail me the exact queries they used for their map of aging-related issues, we can reuse them in Paris (but we can also do find the query ourselves). Paris can collect the data in three weeks from now.
3.D.iI) Explanation: Another way to avoid the multi-language translation problem is to focus on images instead. Images also have the advantage of being more easily and quickly readable. For the same European countries as above, we can use different national google and different query languages to obtain images that are representative of aging in different cultures. The results will be interesting especially if cultural differences are easily visible (but we will know only after trying).
These are the question that can be operationalized right away (and probably we can complete all the dataset collection in about one month).
Data collection on these questions could produce 6 different dataset (which will probably translate in more than 6 maps). This means that if all proposed operationalizations seem interesting to the test-user, we could stop here as we have enough material for the issue Safari.
However, there are other question in Lucy and Kat documents that are possibly interesting, and that we may consider to operationalize. They are listed below with some discussion. If Kat can provide more information, it would be helpful to decide what to do.
4. What is considered good evidence about the needs of older people and the impact of services/policy?
I am sorry but I still don’t understand this question. Kat, can you explain better?
5. Who is funding dementia research and who/what is funded ?
This is a very good question and one that is easy to visualize. However, I doubt that the data exist somewhere. Kat, if you know where to find these data, we’ll be more than happy to work on them.
6. What are the key research issues?
This is classic scientometrics question and we do have the tools to answer it by analyzing the scientific literature. However, the results risk to be very complicated to read because they will certainly includes a lot of scientific jargon. If this is not a problem and if the analysis of scientific literature is really interesting for the test-user, we can collect this data (but it will be difficult and it will take a lot of time). Kat, Lucy, this is your call.
7. How are health and social care programs evaluated? Methods? Outcomes? What metrics are used by key actors?
This is certainly an interesting and probably also controversial question, but is a very difficult one, as I see no other way to answer it then interviewing different institutions and asking them how they evaluate their programs. This operationalization, though interesting, would require too much time. I propose therefore to drop the question unless anyone has a better idea on how to operationalize it.
8. How are older people’s mobilities linked to wellbeing? Ie. loss of a driving license is a trigger point for isolation, depression, loneliness, ill health.
This is interesting. I propose that we keep an eye on the websites/expressions related to ‘driving’ when working on question 1 and 2. For the moment, I can tell if this will give something interesting, but it may.
9. How do/have different generations prepare/d for end of life/care?
This is a huge question. Even if we drop the inter-generational comparison (which is almost impossible to do on the web). Death is as an issue as big as Aging itself and the two overlaps but may also be very different (think of the death symbolism in music/movies). I propose to drop this question for it is to huge. However, if someone comes up with some clever operationalization (this is typically what Richard excel at), I am ready to change my mind.