Dr Azman Abu Bakar MBBS;MPH;PhD Director Institute for Health Systems Research www.ihsr.gov.my

1. Patients’ Unvoiced Needs: Strengthening Doctor-Patient Communication Dr Azman Abu BakarMBBS;MPH;PhD Director Institute for Health Systems Research www.ihsr.gov.my

2. Road-Map • Definition • Relevance in Health Care • What do the Literatures say? • A “peep” into the Malaysian scenario • Where do we go from here?

3. Introduction • Patient-centred care increasingly important • in health care • important attribute of a good health care system • Pt’s right (MSQH guideline) • WHO Alliance for Patient Safety • Vision of Health • promotes individual responsibility & community participation • “Healing” relationship between Drs & Pts • essential to quality care • Communication between Drs & Pts • remains the typical asymmetry of PATERNALISTIC Dr-Pt interactions

4. Definition of Unvoiced Needs Unvoiced needs = Unmet needs A patient is deemed to have unvoiced needs when concerns/problems that he/she had planned to share with the attending Health Care Provider (HCP) could only be shared partially or not at all

5. Relevance of Patients’ Unvoiced Needs in Context of Health care • It is all about doctor-patient (Dr-Pt) communication DURING the clinical encounter • Affects both • Health behaviour • Health outcomes • Critical element of high quality care • Ensures provision of relevant information by patients • Influences pts’ ability to recall drs’ recommendations • Achieve better satisfaction • Improve compliance to treatment regimes

6. Relevance of Patients’ Unvoiced Needs in Context of Health care • Effective Dr-Pt communication correlated with desired health outcomes • Symptom resolution (e.g. control of headaches) • Functioning (e.g. asthma) • Physiologic measures (e.g. BP & blood sugar) • Pain control (e.g. cancer pain) • Emotional status (e.g. mood, anxiety) • Poor Dr-Pt communication results in: • Failure to elicit important health-related information • Wrong management • Poor compliance

7. Relevance of Patients’ Unvoiced Needs in Context of Health care • Macro-level • Primary Health Care • Better health screening • Effective delivery of preventive health care services • Secondary & Tertiary Care • Quality management resulting in • Improved outcomes • Fewer iatrogenic complications • Less wastage of resources • Micro-level • Improved management of pt care & satisfaction

8. Relevance of Patients’ Unvoiced Needs in Context of Health care • Contributory factors • Patients’ culpability? • Doctors’ culpability?

9. Relevance of Patients’ Unvoiced Needs in Context of Health care • Patients’ culpability • Physical inability to hear information • Psychological unwillingness to receive unpleasant information • Anxieties & inhibitions stemming from perceived status differences • Problems of memory recall • Differences in what pts and drs know about disease • Social class or ethnic group membership • Differing role expectations pt & dr have of each other • Differences in ability to comprehend terms commonly used in medical discourse

10. Relevance of Patients’ Unvoiced Needs in Context of Health care • What about Doctors’ culpability? Food for Thought

11. What the Literature Say… • Increasing amount of attention within health care studies • Limited insight gained despite numerous studies • Main reason? • doctor & patient relationship is one of the most complex amongst inter-personal relationship studies • Involves interaction in non-equal positions, often non-voluntary, emotionally laden, and requires close cooperation

12. What the Literature Say… • Vast body of literature on patients’ reasons for deciding to consult but very few research on what patients have in mind while in waiting room regarding forthcoming consultations • Simply asking people about their expectations of the consultation MAY NOT determine their actual purposes for seeing doctor • Extent of unvoiced needs ranged from 9% in US to 88.6% in UK

13. What the Literature Say… • Mixed feelings about the extent to which patients feel their beliefs, experiences & preferences can be shared • Doctors tend to dominate discussions in consultations • Health care professionals’ behaviour can impede as well as enhance patient involvement

14. A “peep” into the Malaysian Scenario

15. Exploratory study in an outpatient MOH clinics in year 2006-2007 1 in 5 patients (20.9%, CI: 15.1, 26.7) have unvoiced needs in Malaysia Source: (Patients’ Unvoiced Needs: An Exploratory Study in an Outpatient Setting (2008))

16. Research Team Members (2007-2009) Low Lee Lan - Institute for Health Systems Research (IHSR) SondiSararaks- IHSR Azman Abu Bakar - IHSR Maimunah A. Hamid - Ministry of Health GohPik Pin – Selayang Hospital MohdYusof Ibrahim - Department of Health Sabah Muhammad Radzi Abu Hassan - SultanahBahiyah Hospital Carol Lim KarKoong - Likas Hospital Abdul Jamil Abdullah - SultanahNurZahirah Hospital Ahmad Mardzuki Ibrahim - SultanahNurZahirah Hospital Loe Yak Khoon - Institute for Public Health Nor Izati Abdullah - IHSR LetchumanRamanathan - Taiping Hospital

17. Operation Framework Patients who sought treatment at clinic Issue Planned: Not sure/cannot remember Issue Planned: None After the doctor-patient consultation Issue Planned: YES Patients DID NOTshare ANY of their planned issue with provider Unvoiced Needs Patients PARTIALLY sharedtheir planned issues Manage to share ALL issues with provider Voiced ** Issues Planned -someone who had planned to share or present his/her problems/ concerns to HCP during consultation ** Unvoiced Need is based on the premise that patients have issues that they planned to share with HCP

18. Objective • To identify the extent and distribution of unvoiced needsinselected outpatient setting • To design and evaluate the effectiveness of an intervention package to facilitate patients to voice their needs to healthcare provider • To formulate recommendations for reducing patients’ unvoiced needs

19. Research design • A Community Trial study • Quantitative & Qualitative components • Conducted in 10 MOH outpatient centres(specialist and primary health care) • 4 centres, FTA intervention package • 2 centres, Video intervention package • 4 control centres

20. Results

21. Unvoiced Needs for Specialist Outpatient and Primary Health Care Centres - Specialist Hospital - - Primary Health care -

22. Patients’ Unvoiced Needs at baseline • At baseline (pre intervention), unvoiced needs ranged: • Specialist clinics: • from 15.1% to 68.5% (7 centres) • Primary care settings: • from10.9% to 45.8% (3 centres)

23. Comparison with International Data # Academic practice, * Qualitative study

24. Are doctors aware that unvoiced needs exist? (qualitative study in Malaysia) Excerpts from health care providers (FGD) “most patients come to us needed explanation, we always talk to the patients and explain what were their problems. I don’t see the problem because we always talk to the patient.” “What we always do is we talk, and patient will keep quiet first, and then after that we stop and we ask them, anything else that you want to know” “Sometimes they keep asking the same thing that we already explain. So, we have to re-explain.” Source: FGD among HCP & patient_July 2008 (8 FGD sessions)

25. Do Patients’ unvoiced needs exist? (qualitative study in Malaysia) Excerpts from patients (FGD) “bilakitadahconcentrate, benda lain sudahtidakmasuk. Kadang2 doktorcakap, kitanakmencelah pun takboleh.” “Kadang-kadang lupa, di rumah kita ingat nak beritahu, bila datang jumpa doktor dan doktor tanya lain, kitasudah lupaapa yang kita nak cakapkan...” ”sambil kita tunggu tu kadang2 memang idea kita cukup banyak, bila jumpa doktor kadang2 kita lupa. Bila doktor cakap lain, kita terus lupa”. “Sometimes even you ask there is also no answer, so no point keep on asking the same question…because I cannot get the answer then I ask again and then she (doctor) will say don’t keep on asking the same question.” Source: FGD among HCP & patient_July 2008 (8 FGD sessions)

26. Factors Contributing to Unvoiced Needs: 1) Forgotten issue 3) Patient hesitancy (Embarrassment, nervous, do not want to waste HCP’s time) “…sayaadamerancang, tapiselalulupa, bilajumpadoktor, bercakap-cakapdengandoktor, teruslupadanbiladahkeluarbaruteringat...” “…malu kalau doktor tu lelaki dantidak beranicakap apa yang difikir, kalau saya jumpa doktor perempuan berani cakap (share)…” “…pesakit lain juga mahu cerita itu ini kan, (jadi) tak boleh lama –lama dalambilik (doktor) tu. Masa terhadkan...” “…Kadang-kadangperkara yang telahdirancangnitidakkesampaian, kadang-kadangkakudepandoktor...” 2) Perceived doctor’s/HCP’s attitude “…Sayapernahterkirmahutanya doktor, tapi itulah kita takut dan rasa pertanyaan kitat itu tidak sesuai , takut kena marah dengan doktor...” 4) Expect doctor/HCP to enquire “…masajumpadoktor , sayasakitperut , tapibila saya bagitau sakit kepala juga, saya dapati doktor tu, dia laju, pantas dan nak cepat , macamseolah-olahdiatergesa-gesa. Jadi menyebabkan saya tak sempat bagi tahu yang saya ada sakit kepala juga ...” 5) Doctor/HCP did not give a chance to ask “…kalaudoktortanyakitajawab, semuakasi cerita, kalau doktor tidak tanya takboleh la cerita…” Source: (FGD among patients_December 2006) – 6 FGD sessions

27. Interventions to reduce Unvoiced Needs

28. Suarakan Keperluan Anda Voiced Your Needs Intervention Components Anda needs Keperluan your

29. Suarakan Keperluan Anda Voiced Your Needs Components Used in Different Centres

30. Suarakan Keperluan Anda Voiced Your Needs Components Used in Different Centres

31. Unvoiced Needs for Specialist Outpatient and Primary Health Care Centres - Specialist Hospital - - Primary Health care -

32. Discussion

33. Intervention Package Local vs International

34. Evaluation of Intervention Package (by overall centre) Reasons for not using FTA Slip FTA Slip no. of patient % Usefulness of FTA Slip

35. No. of patient Evaluation of Intervention Package (by overall centre) Reasons for not view video animation Video Animation Usefulness of video animation %

36. Findings from FGD

37. Findings from FGD (cont’) Quotation from FGD sessions: • FTA slips • From HCPs: • “When they have the questions written down, for me I feel that consultation time is a bit shorter because the question is already there. So, I just look, answer… look, answer…very fast. So, that’s helpful …” • “It does open and guide me to the conversation and from there I know what is their concern and what they want” • “I think the Form (FTA) actually helps in the sense that even though it does not give 100% answers to their questions, at least we can explore.” • “Basically the paper (FTA) actually helps us; to help patients…. But then, at times… when they have ten questions… you will be catching up with time as well.” • “Do whatever that you need to do like increase the patients' awareness of the need to voice out. Then, this will increase the success of your implementation.”

38. Findings from FGD (cont’) Quotation from FGD sessions: FTA slips From Patients : • “…for me, first, I can talk freely, because we can write down each of my health problem. Secondly, the consultation is faster, focused directly to illness (problem).” • “...(previously) cannot deliver, but if with this form (FTA), all my illness, my problem, i can jot down on this form.” • “Better (with FTA), we will take time to think what to write. Sometimes if seen by bad doctor (shouting) then we forget what to ask. It forces you to really think, think and remember…” • “…what I planned to voice, I can write down there (FTA)…” • “Even if the doctor didn’t even answer, at least we’ve already voiced out everything on the paper (FTA), doesn’t matter if they didn’t answer, sooner or later somebody will eventually read it, that is the good thing.” • “Provide assistance to help illiterate patients & special counter for writing.”

39. Findings from FGD (cont’) Quotation from FGD sessions: • Video Animation • From Patients: • “…for me, with this (message from animation), gives me the strong need to ask, because sometimes we worry, scared doctor will scold, so if with this (message) we are free to ask or get opinion and advice from doctor.” • “ Video itu sentiasa mengingatkan tentang segala masalah yang kita hadapi, kita beritahu semua” • ”Macam tujuan cerita (video) itu, pesakit sudah tidak rasa malu-malu beritahu masalah, sudah berani”

40. Limitations of Study • Study Centre: • Study centres were conveniently selected • Of the ten study centres, we had only three primary health care centres in this study • All primary care centres were located rural areas in Sabah only • Video: only in 1 language (Malay) with English subtitle

41. In Summary • Patients’ unvoiced needs do exist. • Patients may have trouble in voicing their concerns. • Both FTA & Video intervention packages were able to reduce unvoiced needs

42. Where do We Go from Here? • The interview is the most powerful, encompassing and versatile instrument available to the doctor - G.L. Engel

43. Where do We Go from Here? Important medical practice trendworldwide is the increasing involvement of patients in their own care Growing recognition that patients’ wants ARE NOT capricious whims but LEGITIMATE needs in themselves Inter-personal communication is the PRIMARY TOOL by which Dr & Pt exchange information Important in situation of life-threatening diseases

44. Where do We Go from Here? • “We need to take time to save time” • WHO is really ignorant • Dr or Pt or BOTH??

45. Where do We Go from Here? • Improving communication but more specifically it is about information exchange • Partnership with patients • Treat patients as you would like to be treated yourself • Well-informed patients wants your • Knowledge • Listening (ears!) • Analysis • Opinion • BUT NOT YOUR DECISION!

46. Where do We Go from Here? • You NEED NOT be the all-knowing doctor of the past • Discuss and reflect with your patients • Create a calm, gentle and respectful atmosphere • Patients lose their autonomy when visiting a doctor and duty of doctor to try restore the autonomy • The time of the consultation is the PATIENTS AND NOT YOURS

47. Where do We Go from Here? • Where possible & feasible • Implement the interventions provided or any other interventions you can develop

48. Thank You