1. Social Networks in Health Research (In order of appearance) David Reeves Anne Rogers Ivo Vassilev Becci Morris Health Sciences Research Group - Primary Care

2. Why be interested in networks in primary care? Traditional variables – eg practice size; staffing; practice culture; patient characteristics - explain very little of the variation in care from one GP practice to another or from one patient to another Perhaps the missing ingredient has to do with the way in which care is co-ordination across the different people/organisations providing care – ie the networks Professional networking in Primary Care

3. Professional networking in primary care can be studied in multiple ways. I am going to describe just three: - between staff within practices - between care organisations - for individual patients Professional networking in Primary Care

4. Within-practice Networking Clinic A: a well-integrated clinicClinic B: a poorly integrated clinic MD: doctor; N: nurse; ST: other staff - Advice-seeking at medical clinics in Minnesota

5. Within-practice networking Receiving information networks at one practice  GP ▲ Practice nurse ■ Practice assistant Chronic heart failureDiabetes - Information exchange between staff at Netherlands practices

6. - Plymouth Infant Mental Health Network Confirmed ties re organising careConfirmed ties re giving care Between-organisation networking

7. Care network: The network of professionals providing care to patients with a particular condition (e.g. CHD) General practice PCT cardiac nurse PCT occupational therapist Primary care Voluntary worker Voluntary sector Housing officer Social worker Local authority Hospital consultant Dietician Secondary care CHD patient Individual patient networks

8. - Proposed feasibility study To determine the feasibility and costs of a study to use SNA to develop a new measure of care coordination. Individual patient networks Can all key people in a patient’s care network be identified from medical records? Can an adequate response rate (70%+) to a network questionnaire be achieved? Is the network data reliable? Can a measure of care co-ordination be derived that reflect the experiences of patients and practitioners?

9. The NHS Improvement Plan regards self-management as an appropriate level of care for 70-80% of patients with a chronic condition. Takes a highly individualistic view of self-management: “…encourage and enable patients to take an active role in their own care…. to use their own skills and knowledge to take effective control over life with a chronic illness” (L.Donaldson 2001) Largely ignores the social context in which people live. Yet social networks are known to be very relevant to health behaviour. The role of social networks

11. COLLABORATIONS FOR LEADERSHIP IN APPLIED HEALTH RESEARCH AND CARE: (CLARHC) - Self-care Support for People with Long Term Conditions Objectives : The experience and self-care support needs of disadvantaged people living with kidney disease, diabetes and heart disease. Peoples’ systems of self-care support and resources (social networks and social capital) The role(s) of social networks in chronic illness management - a help or a hindrance? Develop new theory and new interventions that focus on social networks

12. Broad aims of the programme From self-management to illness management From self-efficacy to types of work (distribution, coordination) Focus on personal networks and inter- organisational networks

13. Realist review Questions: What types of social networks are implicated in long-term condition management? Is it possible to say something about their properties? For whom do different networks work? In what circumstances?

14. Findings Social networks play an important role: shaping illness knowledge and narratives defining normalcy and deviance define the locus of individual and group responsibilities shaping the practices and ways in which illness is managed in everyday life shaping relations with health services

15. Comments on findings 1) The available evidence is: very generic demonstrating that relationships outside the professional field do matter 2) The notion of social networks is: predominantly used in a narrow sense when applied to illness management and tend to replicate individually and professionally centred assumptions in understanding illness management

16. How we address these questions… Focus on ‘types of work’ Define networks as ‘networks of networks' (or personal communities) Develop a typology of networks of illness management Develop a richer conceptual framework around illness management and everyday life

17. Empirical work Administered questionnaire: 330 patients who will be recruited through GP registers and additional 30 people with the condition who will be recruited through community and voluntary organisations We will be aiming to conduct 12 month follow up interviews with these interviewees focus groups with people with the conditions Interviews and focus groups with carers/friends/relatives of people with the conditions Audio diaries of carers and people with the conditions Interviews with local and voluntary organisations and commissioners of services [health-relevant organisational networks]

18. Method: concentric circle mapping technique YO U

19. Network Dimensions Network structure What is roughly the distance from where you live and each one of the people in the diagram? How often do you see (or talk on the phone, text, or via internet) with each of them and for how long? How much time do you spend with each one of them when you meet (or talk on the phone, text, or via internet)? Who among these people know each other?

20. Network Dimensions Illness trajectory and network change How were these relationships different at the time when you were first diagnosed with this condition Types of work involved in illness management

21. PhD social network study Patient level study looking at: –What constitutes a network for individuals with long term conditions –The relationship between lay and professional networks in shaping self-management –How individual networks change over time and does it influence health

22. Methods 30 participants (16 female, 14 male) 1 year Longitudinal study –Initial face-to-face interview –Telephone follow-up during the year –Network mapping technique using concentric circles -adapted Antonucci (1986)- and interview discussion in final face-to-face interview

23. 3 examples of different networks: 1.Invisibility of support 2.Who different network members are 3.Importance of different network members

24. YOU Wife 1a 2a Nurse 1b 2e General Practitioner 1b 2e ID 150a (Diabetes, high cholesterol, male, age: 52) 1. Invisibility of support

25. ID 150a (Diabetes, high cholesterol, male, age: 52) Key: Size of node=distance (larger closer living to 150a) Shape= significance ( square=most significant, circle=150a,) Colour=how often in contact with 6150a(red=daily, blue=less often than every couple of months, black=150a) 1. Invisibility of support

26. Daughter 1B, 2A Dog 1B, 2A Friend 1c, 2D Granddaughter 1B, 2A YOU Son 1D, 2B Brother 1C, 2B Neighbour A 1B, 2C Neighbour B 1B, 2C ID 600s (Diabetes, high blood pressure, high cholesterol, male, age: 65) Grandson 1B, 2A 2. Who different network members are

27. Key: Size of node=distance (larger closer living to 600s) Shape= significance ( square=most, circle=mid, triangle=least, diamond=participant) Colour=how often in contact with 600s (red=daily, green= at lest once a week, yellow = at least once a month, purple=once every couple of months black=600s) ID 600s (Diabetes, high blood pressure, high cholesterol, male, age: 65) 2. Who different network members are

28. Q: Is there anyone here that is sort of, most important? A: Well, the dog. Q: How come? A: Well she's always here. I don't know how I'd have gone on without her to be quite honest. Q: Yeah. What does she do? Just sort of…? A: Oh, she’s company Q: Yeah. A: Company for me really and especially when I lost my wife, like, you know, and she’s always here like, you know. So I think without the dog I'd get… Q: Excellent. Does, and do you, would you take [dog] obviously for walks and things? A: Oh, yeah, every day, yeah. She makes sure. She stares me out when she is ready to go. Q: She makes you get up? A: Oh, aye, yeah. ID 600s (Diabetes, high blood pressure, high cholesterol, male, age: 65) 2. Who different network members are

29. YOU Husband 1A, 2A Son-in-law 1B, 2C Daughter A 1B, 2B Son A 1B, 2B Son B 1C, 2B Sister A 1D, 2C Sister B 1C, 2B Daughter-in-law 1B, 2B Brother 1C, 2D Practice nurse 1C 2D General Practitioner 1C 2D Neighbour A 1B 2B Neighbour B 1B 2B Friend 1D 2C ID 100a (Diabetes, Multiple Sclerosis, underactive thyroid & high cholesterol, female, age 66) 3. Importance of different network members

30. ID 100a (Diabetes, Multiple Sclerosis, underactive thyroid & high cholesterol, female, age 66) Key: Size of node=distance (larger closer living to 100a) Shape= significance ( square=most, circle=mid, triangle=least, diamond=participant) Colour=how often in contact with 600s (red=daily, green= at lest once a week, yellow = at least once a month, purple=at least once every couple of months, black=100a) 3. Importance of different network members

31. A: Yeah, she [friend] tells me all her troubles and I tell her mine. Q: But you say you wouldn't talk to your husband as much? A: Not as much as um, not as much as me sisters and me friends about different things really, because he's only gets, he gets worried and stressed he gets really stressed so. ID 100a (Diabetes, Multiple Sclerosis, underactive thyroid & high cholesterol, female, age 66) 3. Importance of different network members

32. Summary Social networks in health research: 1.Personal networks –Invisibility of support –Who different network members are –Importance of different network members 2.Networks between staff within practices 3.Networks between health-relevant organisations